Librarian in Black readers have likely noticed that in the last several months I have been blogging less and less. There is a reason for that. I am sick. I won’t die from my illness, but I am, nevertheless, sick. I have debated for years whether or not to share this with my professional contacts and readers of this blog.
I have Ehlers-Danlos Syndrome (EDS), and since May is Ehlers-Danlos Awareness Month, I thought I’d take this opportunity to do some issue advocacy for something that is part of my everyday life.
Ehlers-Danlos Syndrome is an extremely rare genetic disorder that affects the body’s production of collagen. And you’d be surprised by how much collagen is in your body (overall, the body is 30% collagen). It’s in your skin, your ligaments, tendons, etc.
What finally made me speak up was a recent conversation with a young woman with EDS. She was just diagnosed and she needed to build a support network. Tearful in one conversation, she encouraged me to continue helping others to keep them from wanting to die instead of living with the disease, like she had when first diagnosed.
I am writing to raise awareness and to help explain my own erratic activity and involvement in library-land. I am not writing, however, to ask for sympathy and I most certainly do not want any pity-posts. Take this information and maybe you can help someone else in your life with EDS get a diagnosis faster.
If you want a quick, 5-minute video explanation of what Ehlers-Danlos Syndrome is, try this video from the Discovery Channel:
Due to the EDS, every collagen cell in my body is faulty and is programmed to be too stretchy and ultimately becomes like an old stretched out rubber band. Normal rubber bands are tight and when you stretch them they bounce right back to their previous shape. EDS sufferers have collagen that is already over-stretched, so when you stretch it out again, it does not bounce back to its original shape, but stays lax and loose. Therefore, we’re super-flexible…but pushing our joints to their limits (as with stretching, yoga, Pilates, heavy-lifting) does long-term irreversible damage.
Practically speaking, this means that my joints are all incredibly unstable and frequently dislocate. Some of my joints bend completely backwards (I can do neat party tricks like bending all of my fingers to touch the back of my hand) while other joints like my wrists and knees bend about 5-10 degrees backwards. The muscles around every single joint also tend to tighten way up, to do the job that my tendons and ligaments aren’t doing: keeping my skeleton in one piece. Dislocations and always-tight muscles = whole body chronic pain.
There’s a lot of collagen in skin especially (90% of skin is collagen), so my skin is super-stretchy and velvety which means two things: I have great skin that will keep me young-looking and wrinkle-free well into my life. But my skin (as well as other collagen-based tissues) bruises and tears easily and takes ten times as long to heal as normal skin does. This is bad for surgeries, and even for simple injuries like cat scratches. So, I’ll probably look like I’m twenty when I’m sixty, but I felt like I was sixty when I was twenty. I truly, truly do feel like an old woman. My body doesn’t work the way it should. It has betrayed me.
Below are a couple of photos that show what EDS patients look like, so you can get an idea of what I’m talking about (incidentally, these are not me):
Think of EDS like extreme rheumatoid arthritis in every single joint, with the addition of random dislocations. And “every single joint” means just that: fingers, wrists, elbows, shoulders, ribs, vertebrae (a particular bad set of joints for me), hips, knees, ankles, toes, etc. People with Ehlers-Danlos Syndrome experience acute chronic pain in some or all of their joints and experience neuropathic (nerve) pain in some or all parts of their body, and some even have heart defects that can cause sudden death. Most of us have additional problems with vision, digestion, migraines, pregnancy, and our jaws and teeth. It’s an all-encompassing disorder. I have the “Hypermobility Type” of EDS, and my most serious symptoms are in my entire spine, hands, wrists, ribs, knees, and hips. Thankfully, I do not have the “Vascular Type” of EDS, which can cause sudden and early death.
There is no cure for EDS. There are only limited treatments for the chronic pain and over-flexibility. Due to the rareness of the disorder, there is no money to be made by medical companies doing research into medication or other treatments. Therefore, like other rare diseases, we with EDS suffer with little hope for any changes.
What does having EDS mean for me on a daily basis?
I wake up in intense pain every morning and am in pain all day. Literally, I cannot remember the last time that I didn’t hurt. I am on 5 different pain medications which have numerous side effects including memory loss, loss of verbal recall, and sedation. I have limited mobility and strength. If I move too much, it hurts. If I don’t move around enough, it also hurts like the devil. I usually walk with a cane to avoid hip, knee, and ankle dislocations. I have half a dozen different doctors managing my care, which means a lot of time in medical offices, at the pharmacy, experimenting with trial treatments, and in general a lot of time spent on my illness instead of my life. Last, but not least, my life will never, ever be what I wanted it to be as a little girl. My life will likely not be as long as it would be if I did not have EDS. I will always be in pain. I will always have limited mobility. I will always be unable to do the things I wanted to as a young woman: hiking, traveling abroad, painting, calligraphy, yoga, cooking, etc.
I was diagnosed with Ehlers-Danlos Syndrome in 2005, a year after I became symptomatic. It is common for EDS-sufferers to become symptomatic in their late 20s, as I did, and to have a hard time getting a diagnosis due to a general lack of knowledge about EDS in the medical community. Before being diagnosed, most of us are told that instead we have Fibromyalgia or that the pain is simply in our heads–never an inspirational thing to hear.
My first sign of EDS symptoms was (brace yourself) dislocating every single rib on my right side, in my sleep. After an unproductive ER visit, I saw a dozen different doctors and received several different diagnoses before finally being diagnosed with EDS by a geneticist. It fit…all of it. Every symptom, every physical characteristic, my family history, all of it fit.
As you might imagine, in the following week I researched the heck out of the disorder like any good librarian. I checked everywhere. The most useful resource I found was the Ehlers Danlos National Foundation (EDNF). EDNF provides a vast amount of information as well as support groups, research resources, and contacts for advocacy. If you want more information, I would recommend their site as a place to get caught up. You can also review the Ehlers-Danlos Support Group.
After my diagnosis and research, I followed up by trying every kind of doctor or health care practitioner who might be able to help me: acupuncture, chiropractic care, rheumatologists, massage, spine specialists, neuromuscular therapy, cranial-sacral therapy, sleep specialists, chronic pain specialists, support groups, biofeedback, nutritionists, homeopaths, naturopathic doctors. You name it, I did it (and had to pay for it out of pocket, too). I kept busy for a couple of years with doctors, paths of treatment, and hope for a magical cure.
But I never took a leave of absence. I went to work with dislocated joints. I continued to blog. I continued to travel and present. I continued to write. I did not take it easy. I even walked the 7 ½ mile Bay to Breakers Race a few months after my diagnosis to prove to myself that I was OK. But I wasn’t. And a magical treatment wasn’t to be.
In the last few years my health has continued to deteriorate. The last year has been particularly bad. There has been grief; I no longer have that possible magical treatment to look forward to. This is it. I will not get better, barring some spectacular advances in stem cell therapy, which is the only way to heal faulty DNA that produces messed-up collagen.
Living with EDS means that the moment I get home from work I get horizontal to take pressure off of my spine and I don’t get vertical again until the next morning. The same is true at conferences or other events (where you won’t see me at late night drinking fests or early morning breakfasts).
Living with EDS means that I rely heavily on my loved ones (especially my caring husband) to take care of me because I’m frequently incapacitated and unable to take care of myself, whether it will be for a couple of hours, a couple of days, or a couple of weeks.
Living with EDS means that I still am thankful for every day that I do not have to use a wheelchair, days when I can still move and walk around. I appreciate what abilities I do still have even more because I don’t know how much longer I’ll have them. Pain-free days don’t happen, but low-pain days usually result in a flurry of activity while high-pain days mean lots of resting, pain medication, and trying not to cry.
So, to conclude…please do not be sad. Be educated. That is what this post was all about, after all. So, what can you do to make my confession worth it?
- Remember what EDS is and what its symptoms are (hypermobile joints, fragile or stretchy skin, chronic pain). Maybe someday you can help someone else who doesn’t know what’s wrong with them get an early diagnosis and treatment.
- Be patient with me as I have my bad days, weeks, or months. I am not ignoring you, I just can’t muster the energy or get through the pain to do what I have to do sometimes.
- Donate to the Ehlers-Danlos National Foundation.
- Buy flowers through EDNF’s FlowerPetal.com site and a portion of the sale will go directly to EDNF.
- And finally, if you want to learn more, watch this longer video about a woman with EDS, the effect on her life, and her process to diagnosis.
Thank you all for your support, especially those who have known of my disorder and support me through patience, kindness, and making sure I get enough rest at conferences (thanks Aaron!). And as always a huge thanks to my husband for his daily support. It means the world to me.
Update: Librarian Rick Roche has created a wonderful Ehlers-Danlos Resources list for more information: Ehlers-Danlos Syndrome: A Reference Librarian Looks at Consumer Health Reference Sources. Take a look. (and thanks Rick!)
May 29th, 2009 at 5:45 pm
Oh, Sarah, I’m so sorry to read this! I’m another who has the classical type of EDS, and your story reads much like mine. I hope you won’t take this as a “pity post,” because sometimes, one of the most powerful things we can do is just to tell our stories.
I’m glad to hear that, despite your chronic pain, you continue to be upbeat and thankful. I know I have trouble with that sometimes, and I admire you for showing this face to the world.
May 29th, 2009 at 6:21 pm
I’m so sorry.
You are very courageous to come out about your illness like this. I think human instinct is to hush things like this up, but your post will likely give strength to many others- not to mention helping with diagnosis (I had never heard of Ehlers-Danlos Syndrome before reading your post).
May 29th, 2009 at 6:30 pm
This definitely does not change your awesomeness. I applaud you for bringing light to this and sharing something so personal this way. Thanks you and best wishes.
May 29th, 2009 at 7:33 pm
Sarah, your courage, willingness to share and to spread awareness are inspirational and amazing. Thank you for this and all you accomplish!
May 29th, 2009 at 8:20 pm
I am in amazement that the first comment to this post is from another person with Ehlers-Danlos Syndrome. Thank you Ladybug Heather for sharing your own story. And thank you to the other commenters for your kind words.
May 29th, 2009 at 11:15 pm
Reading a wonderfully moving and honest piece like this from a writer who is consistently wonderfully moving and honest–and often funny as hell in spite of/because of what she faces moment by moment, day by day, year by year–reminds me why I always have and always will give up sleep to keep up with all you produce. Thanks for doing so much to keep so many of us connected to what otherwise would be the unseen world around us. And kudos for doing it so damned well; no wonder you’ve been acknowledged for so effectively moving and shaking us.
May 30th, 2009 at 4:36 am
I wouldn’t presume to pity you since you so obviously don’t pity yourself. You may get angry at the hand that fate has dealt you but pity, once the initial shock of diagnosis is over, is obviously not in your nature. Congratulations on your bravery.
May 30th, 2009 at 4:54 am
Definitely not a pity post. But an applause post about your incredible strength. You always inspired me, but now even more deeply.
May 30th, 2009 at 5:46 am
Sarah, I have always looked up to you and admired the hell out of you. I do that even more now. Thank you for this incredibly personal and educational post. You are a really amazing person, and I consider myself incredibly lucky to know you.
May 30th, 2009 at 7:24 am
Sarah You Rock.
I’m a librarian with Rheumatoid Arthritis. I never shared that information with anyone until this year when a flare landed me in a wheel chair until my docs could correct my meds- I’m doing great now with a combination of new treatments but that week of working on wheels blew my cover.
I think it’s important to share our stories. I firmly believe that increasing awareness is the most difficult and most productive fight against chronic disease. (as a side note: next month I am getting married to another librarian and thanks to support from my family and from co-workers who covered shifts for me while I was at physical therapy, I will be dancing at that wedding!)
As a Librarian my goal is to get people the information they need. I think that sharing our personal experiences (when appropriate) in conjunction with reliable information is more powerful…that you shared your story along with additional resources really means a lot. That you shared your daily experiences with the audience that has come to love your posts and respect you as a professional really ROCKS!
May 30th, 2009 at 8:45 am
Thank you 4 sharing such personal info ! I wish you a lot of strenght to “beat” with the pain. Best wishes
May 30th, 2009 at 10:23 am
I too want to thank you for sharing this!
Sometimes you have to bring somewhat private matters to the open, to the professional space as well. Professional and private life can’t always be separated.
Being sick, you don’t want pity, bur you need people to understand why you’re tired, and so on.
I have never written a comment on your blog before, but I think it’s one of the best ones in the library field. I’m a Swedish librarian, who had a brain tumor last year, and I have learned all about being sick and being open with it since then.
Thank you for being open, it brings strength to others who suffer, and maybe some understanding to those who know little about being seriously ill.
May 30th, 2009 at 12:15 pm
Thank you all. Just to clarify – I do not have any intention of stopping my blog, or not writing or presenting. I will continue to do those things as I have in the 4 years since being diagnosed. I may do a bit less, but will do as much as I can.
May 30th, 2009 at 2:06 pm
Sarah, everything you do – both at work and for your family members at home – is even more amazing considering the constant physical pain you endure.
Thank you for sharing your story via this post. People need to know! Although already aware of your struggles with EDS, i certainly learned a lot more from your post. And when i tell others about it, i’ll finally remember it stands for Ehlers-Danlos Syndrome.
It seems to me that you most fully deserve some organic dark roast coffee and at least 80% cacao chocolate.
rcn
May 30th, 2009 at 7:56 pm
Sarah,
I’m not so courageous as you quite yet, but I also have a secret- I’m an academic librarian with bipolar disorder. I’m highly functional and am able to control the disorder with medications and talk therapy. Given stigmas and assumptions about persons with mental illness, I’m not willing to disclose my diagnosis in the workplace– yet. But posts like yours nudge me closer to doing so.
Thank you for having the courage to share, and for inspiring others to do the same.
May 30th, 2009 at 10:11 pm
I continue to hope, pray, and advocate for stem cell research as it is one of the untapped resources for those of us with genetic diseases. Hugs to you my friend!
May 31st, 2009 at 4:44 am
From one chronic pain buddy to another, I can only say how proud I am of you. On the good days, we’ll laugh in defiance of the pain, and on the bad days we’ll hug each other across time and space and wait for the hell to end. You’ve got a whole army (flock? shelf?) of librarian friends out there, ready to lift you up at a moment’s notice. You’re one of the strongest people I know, and this post only goes to prove that tenfold. Love! Cliff
May 31st, 2009 at 6:50 pm
Hi Sarah,
I’ve lurked on your Blog for a couple of years. I’ve read many posts that I felt like commenting on, but nothing has moved me from lurker status to active participant until your recent posting about your illness. I have an oddball disease too. It’s awful, absolutely mind-numbingly awful, when your mom, your best friend since grade 2, the nicest woman in the office, your gym buddy, when everybody says, “You have what? I’ve never heard of that. Are you sure? Isn’t there a drug for that? ”
Even better, “Why do you take all those pills? Have you tried a naturopath?. I know a great herbalist who will balance your vitamins.”
Thank you for your courage in telling us about EDS.
The best advice I received was from a doctor who told me that the people involved with an unwell person will tell and impose their stories on that patient, as I’m doing with you. She told me to understand that what they say is their story, and that my story is mine. I’m not expressing myself very well. What I’m trying to say is to ignore negative comments from people around you, they have an agenda. Your agenda is different. Selectively ignore people.
Bon courage.
Ruth
May 31st, 2009 at 8:22 pm
Ehlers-Danlos and the Librarian in Black
June 1st, 2009 at 9:44 am
I admire you so much for posting this and for all the awesome stuff you do. I’ve said it before but I’ll say it again here, you know I’m always around for anything you need!
June 1st, 2009 at 11:12 am
Keep on keeping on, Sarah. Your courage is an example to us all to never take our lives and health for granted.
June 1st, 2009 at 2:51 pm
Hi Sarah,
Beautiful explanation of EDS and how it affects our bodies!
It’s not easy to let colleagues know something so personal. For me, I felt my diagnosis provided an explanation of my decreasing productivity and increasing unreliability at work (all relative, of course) and around the home (I can’t do as much cleaning as is needed!). EDS is not to be used as an excuse, rather more of a reality check for me and others in my personal/professional life that I can’t do what I once was capable of, which can be very difficulty to deal with on so many levels.
I appreciate your mention of grieving too. I think letting go is the most difficult part of coming to terms with a chronic disorder. I too have had so many dreams left to the wayside due to injuries, fatigue, etc. If you ever need an ear…
Thank you for your bravery and for spreading the word about EDS. You are an inspiration.
June 1st, 2009 at 3:42 pm
Hi Sarah — longtime reader, first-time commenter. Thank you for all that you do! I had no idea you were overcoming such adversity, and doing it so cheerfully, too — your accomplishments in the profession are so remarkable and valuable, and most of us had no idea that you were dealing with a chronic illness. Your story and courage are inspiring to me, and I’m sure to many others that read this as well.
Thanks so much for sharing this. It reminds me that in all of my interactions with other people, I never know the full story of what they may going through at that time. Reminding myself of that helps me be more compassionate and empathetic.
June 1st, 2009 at 7:21 pm
Sarah, I hope that this post is shared far and wide, to others who suffer and to all their friends and family. I hope many of us help. Librarians are charged with getting books in the hands of those who should read them. In these online days, we have an extended calling. Thanks for you honesty and eloquence.
June 2nd, 2009 at 4:29 am
I add my own heart-felt thanks to the chorus of others throughout the blogosphere who appreciate your decision to share this story with your readers. I’ve been checking your blog virtually every morning for several years, and am amazed to learn that you’ve been coping with this disease all this time I’ve been reading your eloquent, thoughtful, useful, and frequent blogposts. And this was one of the MOST eloquent, thoughtful, and useful of them all. Good luck to you, and thanks for being willing to continue posting when you feel up to it.
June 2nd, 2009 at 6:59 am
I stumbled onto your blog a few moments ago. My beautiful daughter has EDS (hypermobility/classic forms). She is an honors student as well as community volunteer and enjoys all of the activities any 18 yr old enjoys. She is presently in a flare. Doctors in our area have failed us on many levels. She’s seen so many drs and no one understands how to help her, in fact, the majority of drs she’s seen know nothing of EDS. She has been misdiagnosed several times and those drs washed their hands of her when she “failed to have what they thought she had.”
She doesn’t want anyone to pity her, however, she would appreciate having a dr who understood what this syndrome does to her and help her get through these periods when she feels so bad. As her mother, I keep searching and hoping we can find her the help she so desperately needs. Thank you for such a powerful post and for having the courage to tell your story.
June 2nd, 2009 at 2:17 pm
I saw you at Internet Librarian in 2006 and remember thinking that you reminded me of my daughter, even though you look nothing like her. You present a strong capable front, but I know the daily small challenges you’ll face, like trying not to dislocate your shoulder while getting dressed. I’m glad you don’t have the vascular type, as it turned out my daughter did. I look forward to learning more from you about library technology, and I hope you get to go to an EDNF conference and meet some great people you can have fun (careful fun)with.
June 2nd, 2009 at 9:24 pm
Thanks so much for sharing this, Sarah. I had no idea about EDS before and am truly inspired. To accomplish what you have accomplished and the travel required for your speaking engagements, etc, you truly rock!
June 3rd, 2009 at 5:50 pm
Sarah, when I first saw your post, I got so upset that I couldn’t read it the whole way through. I had to come back a few days later to finish. wow. so many thoughts and emotions…
First, I’ll admit that it reminds me not to be such a whiner about little things that seem like big things, but really aren’t.
Secondly, I’ll defer to being the “word person” that I am. are you tired yet of reading responses that contain words like “courage, strength, and inspiration”? JIC you are, let me add a few adjectives of my own: Determined, resiliant, tough, brave. Exemplary, thankful, appreciative. Hard-working, respected. Butt-kicking, amazing.
I’m sure I’ve forgotten a few, but you get the picture. Rock on, woman.
June 4th, 2009 at 4:15 pm
Thanks for sharing, Sarah. I am forwarding your post to one of my library co-workers whose daughter was recently diagnosed.
June 5th, 2009 at 12:36 pm
I, too, have long followed you without comment. You and other librarian bloggers are indeed a special breed of searcher and thinker. I always learn a lot about how to think better as I study how you approach topics.
Just know that I am keeping you in my highest thoughts, and that many many people appreciate your work.
June 5th, 2009 at 4:10 pm
This was incredibly informative and helpful. Thank you for writing and posting about this, and thank you for your amazing contributions to the library profession. I have nothing but admiration and awe for you and your work.
June 5th, 2009 at 7:31 pm
Hi Sarah & all,
I read your deeply moving story Sarah. Thanks for sharing about your struggles with EDS. Your story sounds much like my own. I also have EDS and started with bad symptoms at 29. I wasn’t diagnosed until I was 38. I am in Australia.
I was a nurse/midwife and very active before the symptoms started. My husband is a doctor. I have two children, one also with EDS. I spend heaps of time (especially when I am having a flair), searching for answers and treatments.
I have spent time in a wheelchair, and need a walking stick during flairs now. The thing that has helped for me is adequate pain relief during flairs, and then regular low dose pain relief when well for chronic pain. I need a routine life, with room around the edges to rest. I have help with cleaning/heavy shopping & use some aids in the kitchen. I need lots of happiness around me. I love music, art & hugs & laughs with the family!!
The single most important thing for reducing pain & improving my mobility has been pilates. This is not the same as gym pilates or tv fad pilates. I have a program written by an expert physio to do at home. When stronger I go to a studio and use machines and light weights. It has really helped and over 12-24 months I was able to walk well again, even though I still need to be careful.
Recently I came across a physio in the UK who designed a program for herself when she was diagnosed with EDS. Here is the link, even though I haven’t read her book.http://www.pilatesbook.co.uk/site/section/4/1/about-the-author
If you ever want to chat, feel free to contact me.
Regards, jess
June 7th, 2009 at 1:28 am
Sorry you have EDS, too. I have (classical) EDS and an MS in Information Sciences.
I’m up late because my ribs hurt.
June 7th, 2009 at 8:54 am
Hi Sarah, I’ve been reading your blog for some time now. Sorry to hear of your situation. My daughter too has a rare genetic disorder (Peutz-Jeghers Syndrome) and we belong to an online support group. That group has helped us tremendously and I hope yours does the same for you. We don’t know what we would do without the web. You will be in our thoughts as you go through this journey.
Cyberhugs,
Cheryl
June 8th, 2009 at 1:05 pm
Brave Sarah, I’m glad you shared this with your friends and associates here, we care about you. Your voice will only help this cruel illness get the attention it deserves, and with no stigma. It’s not your fault. Peace for you, and best wishes.
DrWeb
June 8th, 2009 at 2:52 pm
I want to extend once more my appreciation, awe, and inspiration at the amazing outpouring of support, similar stories, and offers of help. My heart has grown two sizes since writing this and reading everyone’s comments. Thank you!
June 12th, 2009 at 3:46 pm
As a fellow person with EDS (probably classical, but I need to be tested for vascular), I have to say I’m a little jealous that you work!
I’m working on finish law school, even if it’s two classes at a time (not normally allowed), and then…well, hopefully, I can come up with a nontraditional practice that will let me do what I’ve always wanted to do – try to make the world a better place.
It will take some doing, but really, what’s the alternative? Feel useless?
~Kali
http://www.brilliantmindbrokenbody.wordpress.com
August 31st, 2009 at 6:22 pm
I’m echoing everyone else here, but I felt the need to repeat the theme: thanks for being brave to share this with the world. I’ve read LIB for quite some time now, I’ve just been off my feed reading for the past few months and am just now catching up. Today happened to be a pretty big self-pitying day for me and after reading this, it was a nice reality check. It’s good to be reminded of what some people have to deal with on a daily basis that I take for granted. I very much appreciate your sharing and wish you the best of luck in treating your illness.
Michael
October 1st, 2009 at 4:14 pm
Sarah, thank you for your educational post. My niece has come to live with me and my partner of 20 years. We are just learning how difficult it is to find medical professionals to help manage her eds. We are searching for any information we can find to guide us and make her life as comfortable as possible. She has to overachieve. If a normal college student takes 12 credit hours, she has to take 17 just to prove to herself she can do it. I fear she is denying herself any slack just because of her eds and its related problems. We will do whatever it takes to get her thru the next 4 years and then on to med school as that is her dream. Thank you again for being strong enough to keep going and giving. As far as I am concerned, you are a true professional and a grand human being. Take care of yourself. Hillery
October 8th, 2009 at 10:58 am
Hi Sarah, I too have EDS type 3 and am 48, look back every 6 months and wish I could be there as far as the pain,only continues to worsen , you are not alone . I too am finding it very difficult for specialist to listen and understand and even so much as do research to help us. contact me if you just need to chat, as I am unable to work ,so at home 99% of the time.
October 18th, 2009 at 12:44 pm
Hi Sarah,
I was diagnosed with EDS type III about a year ago, So much of what you said rings true for my own situation. Some days are better than others, but one thing I have found that has helped tremendously is an herb called Rhodiola Rosea. I did a ton of research on it before taking it, and now that i’ve been on it for just over six months, I will never go without it. Do some research of your own if you haven’t heard of this amazing herb.
November 3rd, 2009 at 1:51 pm
Hi Sarah…I’m an ILS student who has EDS as well. I have had symptoms since before I was born and have many complications from it. I changed my major because I needed a job I could possibly do from home and I remember being little and getting lost in the library reading eveyrthing I could about everything I could.
My friend who also has EDS has begun to pursue an MLS online…I’m going to show this to her.
Thanks for sharing your story Sarah.
November 16th, 2009 at 4:47 pm
I have become disenchanted with EDNF myself and will no longer support this organization as they do not fund scientific research. Yet they still claim they support research of which I have yet to see in the past several years. Only for two years did EDNF actually fund scientific research.
EDNF claims it is because of budget shortfalls but the annual budget has been quite consistent and over $300,000.00 a year. As a non-profit this information is public record.
If they have no intention of funding scientific research they should not have promised it to so many for so long. The organization is highly misleading. With the funding they have I feel it is inappropriate for them to use the funds they have and not set any aside to actually fund research to provide better care for those they are supposed to serve.
I now deal with other EDS organizations and send them my financial support instead. Now I can be sure we will have funding for research as EDNF is not involved.
January 22nd, 2010 at 3:39 pm
hi sarah.my name is Leanna i am 17 and i was born with EDS but was not diagnosed with it until i was 6 years old.they do not which type i have because they were not that familiar with it at the time of diagnosis.i have struggled with this illness my whole life.i get hurt very easily.the tiniest thing can tear my skin badly and it is hard for them to put stitches in my skin sometimes because it just causes it to tear more.i expierence the pain and flexibility also but i have to be careful not to over do because of the risk of injury.when i found your story i was relieved to know that im not alone in fighting this disease.i would love to hear from you sometime.you can email me at AnnaBear92@rocketmail.com.
Thank you
June 19th, 2010 at 8:52 am
This is a great blog. I have bookmarked it and hope for more. I enjoyed it!
September 20th, 2010 at 11:43 am
Yes, I also am proud of your coming out.
I have Elhers type 3.
I know thw diffculties you face day to day just wondering if your body will allow you to make it to tomorrow.
But no pity doesnt help nothing,because if you fear the out come of what you know is in our future as E.D.S survivors
your letting it get your last breath so to speak. I have known about my E.D.S since I could walk. Growing up with it and being made fun of as a kid for the braces I had to wear to keep my joints where they belong made me realize it’s just who Iam. Nothing to be ashamed of. Even when my husband has to pick up off the floor because can not walk because my muscles are spasming so bad I cant even stand up on my own. But I go through it with a smile on my face cause its just another da and tomorrow could always be better!
September 20th, 2010 at 12:58 pm
I just want to say thank you to everyone who has also chosen to share a personal story here about EDS. EDS is a ruthless disorder, and as a largely invisible one, it’s a challenge to help people understand the impact and limitations it places on an individual. I live with it every morning, every day, and every night. I never forget, but I do press on, hopeful that my symptom management will continue to improve as I listen more to my body about what it can and can’t do. And heck, I can wear high heels (well, 2″) again after 5 years, so it seems like it’s getting a bit better
October 7th, 2010 at 2:02 pm
I want you to know that your words are definitely a strong voice to this condition. I applaud you on your courage. I too have EDS, classical version
It is a fine line with me about sharing this with others, however, I just had to have 2 spinal surgeries, so I did post about my diagnosis on facebook. My diagnosis came this last March, a month and a half after my father’s unexpected, and unexplained sudden death. I have come back to your site several times just to read it, and know that when things are difficult, when I need to be isolated to deal with the pain, that I am not completely alone. There are beautiful people that are struggling with this horrendous condition, and are battling it too. I am on the grieving stage with the diagnosis, but I am a “fix it” kind of person, and I have spent countless hours researching and trying whatever I can to protect my body, and/or delay the degeneration. I am 40 years, a wife, a mother to three beautiful babies (ages 6-11) (they will always be my “babies”). Part of my drive to keep on researching, and do whatever is necessary is to make sure to be able to still be a good mother to them, and then on the other hand, I need to “figure it out” in case one of them would be unlucky enough to have inherited this. Again though, it is a fine line between researching and doing what I can, versus letting this consume me and stop living because I am dedicating so much of me to “conquer” this condition. I try to have a balance. My thoughts are with you, as you continue on being a brave soldier, knowing that your enemy may attack, but your spirit will not be defeated. Take good care of you, and feel free to email me at anytime if you need someone else that understands the dark moments.
October 7th, 2010 at 3:14 pm
Terri – thank you for sharing your story as well. Remember, you are not your illness. Ehlers-Danlos Syndrome is not who you are. You have other strengths, interests, and passions. That is who you are. Your EDS is simply something you have to cope with as it raises its ugly head from time to time. I figure that every person on this earth has something that he or she has to deal with, be it an illness or a disability or some other mental or physical challenge. We all have something, and we all deal with it in our own ways…and the earth continues to turn. Just make sure that you turn with it!
October 7th, 2010 at 9:44 pm
Kudos, Sarah!
I have Ehlers Danlos, classical and hypermobilty types, and am still having testing done regarding the vascular (although I feel it’s not, better safe than sorry). Being a long time blogger, I had a heck of a time trying to explain a few years back why my prolific blogging came to a screeching halt, or at best a stuttering mutter here and there- I wasn’t diagnosed at the time, but in physical therapy and getting worse, and worse, and worse.
I’ve read your blog off and on throughout the years and never suspected we’d have this odd disorder in common. *shakes head* Ah, life.
To those of you who are recently diagnosed, yes, there will be a period of grieving. Then denial again. Then grieving again. I go back and forth, but it’s always better than not living at all.
As you pointed out, I am so much more appreciative of small things, and they are so much more beautiful because of it.
Life goes on. I raise my son, I do what I can, and I still hope for a cure, or at least something to halt the process in it’s tracks, you know? Tonight I’m bummed because I was hoping to get out and see friends, but at least I’m able to sit up and get online. I sure don’t whine about the little things anymore! Stuck in traffic? Hey- I can drive that day! Whoohoo! Each time it rains I love the sound, the smell, the feel of it, even though I know it inevitably leads to a day or two of agony in all of my joints, more so than usual. It’s all a matter of perspective.
And to all of you who have never heard of Ehlers Danlos Syndrome before, please, speak out! You can help save so many more of us from suffering in silence (afraid to hear one more doctor say it’s in our heads), save us from getting worse (as I was in physical therapy before I was diagnosed, doing things that no one with EDS should EVER do!), just raising awareness can cause a massive shift in the lives of those with EDS…
THANK YOU!
Jill,
diagnosed (finally!) at age 35
December 5th, 2010 at 2:56 pm
My son was just recently diagnosed with classical EDS. It took a long time to get him dianosed. The problems started when he was two years old. He would wake up screaming in pain holding his legs. I took him to a docter and at that time they told me that he was just having growing pains and that he would grow out of them. His knees began to dislocated, often at night, there was nothing i could do but hold him and try to confort him as much as i could, because when i would take him to the hospital they had do answers so they would send us back home. He is six years old now and he is very flexible, his fingers and thumbs can bend to touch the back of his hands his skin is super soft. about three months ago i took him back to the docter and told him that i wanted answers, that as a mother i knew that something was going on, he tested his flexibilty and told me that all the signs point at EDS. He set up an appt for leg braces to keep his knees in place and an appt to see the gene doc who dianosed him with EDS. Im super scared and confused. I can not believe that ive never heard of EDS before and niether has anyone i know, it really needs to get out to the public and be more recognized to raise more awareness, so that one day there may be treatments or even a cure. Thank you for sharing, i wish you nothing but the best, thank you for the information that you have posted. I have checked out the foundation site and will introduce as many people as possible to it. thanks sincerely Patricia
December 7th, 2010 at 9:32 pm
Patricia, I understand full well the difficulties of diagnosis and of being taken seriously by uneducated medical professionals. I have been called “hysterical,” a “substance abuser,” a “hypochondriac,” and many other things by doctors in emergency rooms and critical care clinics unable to comprehend that Ehlers-Danlos is real and that I was in fact diagnosed with it — sometimes even at the very same hospital as my specialist doctors. Patience is key, as is taking the physician resources CDs that EDNF provides with you every time you go to a new doctor or hospital. If there is anything I can do to help you or your son, don’t hesitate to email me at librarianinblack@gmail.com.
February 7th, 2011 at 3:27 am
hi. i think that sharing your story is the best thing you could possibly do. i know it’s hard and i very much respect your ability to do so. you have done what so many of us with EDS can’t and the words you used were absolutely perfect. I was diagnosed when I was 7 and had severe issues with my joints since birth. I grew up seeing the types change and information go back and forth and all I was able to do was to be their guinea pig and hope for the best. Seeing the people who are able to get up and live their lives, even sometimes, helps me to keep the faith and the belief that once I find the right doctor, the right treatments, I will, too! Thank you so much for sharing this. It truly means the world.
April 17th, 2011 at 5:53 am
[...] Hello. My name is Sarah, and I have Ehlers-Danlos Syndrome. | Librarian in Black Blog – Sarah … (librarianinblack.net) [...]
July 28th, 2011 at 7:20 am
My nephew had the VEDS condition. I read some articles about a treatment with Stem Cells. I have questions like : Does my nephew is going to die? How severe the condition could turn? Please help, and thanks for the web site
July 28th, 2011 at 12:35 pm
Luis : I am so sorry to hear about your nephew’s condition. Unfortunately I cannot answer questions about your nephew’s specific condition. It would be best to talk to him and his parents to learn what the doctors have told them. Only his doctor knows the true state of his VEDS. Here is a description of VEDS from the National Institutes of Health: http://www.ncbi.nlm.nih.gov/books/NBK1494/ I hope that can help to answer some of your general questions. Best of luck!
August 31st, 2011 at 4:06 pm
Thank you for sharing your story via this post. People need to know! Although already aware of your struggles with EDS, i certainly learned a lot more from your post.
October 10th, 2011 at 5:49 am
I was just diagnosed with EDS by a geneticist a month ago. Even writing this now I am in tears, I am 29yrs old and do not want to believe that this is going to be my life forever. I have so many dreams and goals I’ve wanted to pursue that I pushed aside many years already due to self confidence issues not knowing that I had a an EDS diagnoses lurking in my future. I have suffered from depression many years due to other issues that to now have a physical condition on top of that is terrifying. It’s like the clock was ticking in my 20′s and I had no idea. I took my health for granted and thought I would have many decades to do the things I wanted. Now on dissability with no career and very little money coming in, I am not married and have a hard time believing that anyone will ever love me and want to marry me knowing I would likely just hold back another person and burden them with caring for me. I am not close with my family, they are spread out all over and none of them are sick so they just see me as lazy and no fun to be around. My mother lives just down the street from me but I never speak with her, I try but she is distant and wants nothing to do with me. She does not believe I am in as much pain as I claim and hates that I take pain killers. All I want is to get regular phone calls from my family and friends to check in on me and keep me company sometimes. I am very lonely and spend most of my time at home with my cats. People think I’m young, pretty and look like a model so my life must be wonderful but they have no idea. And since I only go out when I’m feeling well and not in pain mo one ever thinks or believes there’s anything wrong with me, especially since it isn’t visually obvious. Anyway I read your post a few months ago when researching EDS and then just read it ago today and well in still at the stage where I believe that if only I had money I could be fixed with accupuncture, massage, physio and propor nutrition. Also I’ve been reading about human growth hormone supplementing. Sounds promising but who knows. Anyway thanks for allowing me to post on here. Ciao
October 10th, 2011 at 6:02 pm
I completely understand where you are at right now. A big issue you touch on is that people see us when we’re doing okay. They don’t see us squirreled away in our bedrooms, crying because of the pain. So, to them, we look fine and therefore are fine. It’s important to let people know about your reality, as much as you feel comfortable. People generally are compassionate once you point out a situation to them. And if you need someone to listen, bounce ideas off of, or talk about the many (many) treatments out there that either work or don’t, feel free to give me a buzz. Email me at LibrarianInBlack@gmail.com and I’ll hook you up with my other contact information too. You’re not alone.
November 10th, 2011 at 5:44 pm
Myself and two older children live with Ehlers-Danlos as well. I am sadden to say that ER visits are meet with me spelling the name and the nurses and doctors looking the Syndrom up. I have had many trials with my oldest daughter she is 16 and not as active as my son and the Ehlers seems to be taking her life over and it pains me. Kristin said to me a few minutes ago ” I wish someone famous got Ehlers so people could kind some kind of help for it” sad but true not alot is said or studied to this day about Ehlers. Feel free to contact me I could use some suppoprt as well. 740-504-2630
March 14th, 2012 at 10:23 am
Help needed please, I’m looking to try and get intouch with any girls aged between 13 and 18 who suffer from Ehlers-Danlos- Syndrome to try and help my nice Casey with any questions she has now she is getting older. (this may sound a strange request but it is such a rare condition and we have so many worries and questions). Please if you can post this as your status and ask your friends to post to their friends etc etc even if it’s only for a couple of hrs and hopefully somewhere along the way we can get some help
Many thanks xxx
May 12th, 2012 at 12:40 am
I’m Russ.. I was born in 1989 and im a 23 year old college student.. I was diagnosed with EDS type 6.. Nobody else in my family tree have my condition that we are aware of..It effect my connective tissue mainly in joints, legiments, and skin.. Other things minor followed such as weak blood vessels(thinner), asthma, scoliosis, teeth problem(in a month im currently going to have a full mouth set of implants), chronic pain, joint dislocations, and eye problems.
I never let my medical problems run my life. I try to be as normal as i can even if it causes me pain after. In the long-run it might be more serious or cause more pain if i do more than i should but you only live once so you might as well have fun a long the way..
Ive had 2 retina detachments in my left eye and lost 80% of my vision in that eye.. But
i still drive a car, i go shoot my gun and friends gun at the shooting range, and im going to college about to transfer to UC San Diego for engineering..
Ive had over 10 surgeries on my back cause my scoliosis.. they fused the top and bottom of my spine when i was in like 5th grade. They put two metal rods in my back to prevent me from having a hunchback, but i have been as straight has a normal person. Actually i cant bend my back. Two years ago when I was 20-21 years old the doctor found out i was bench pressing 185 pounds so they removed the rods because at that time they were doing anything since my back was completely fused rock solid. Gioing on major roller coasters might give me pain at the end of the night, but they dont effect me that can cause problems.. Nothing a percoset or vicodin wont treat.. lol.
Heart problems, I only have thinner blood vessels so that can cause a lot of fatal problems if my blood pressure gets to high.. But actually i have low heart rate and blood pressure so im fine.. I still donate blood and i do drink energy drinks. I like to even play my weekend tradition on Beer Pong..
Skin… Yea getting cut and bruises are very common.. But i have had so many cut and bruises that they dont even hurt me anymore. You can even pour alcohol and it doesnt hurt.. Even though i have weak skin i still like to ride dirt bikes since im from victorville california, United States, I took Ju-Jit-Su for 3 years(MMA), I wrestle with my older brother constantly and hes a MMA Fighter(Heavy Weight) and US Marine, and a healthy sex life with my girlfriend.. Guys you know what i mean.. biting, scratching, etc.. LMAO
I was very popular in school and tried to hide my medical condition from people and said other reasons for being like this.. scars i said car accident and being skinny i said i can grow body fat because i have a lot of muscle from working out.. I played baseball and basketball in junior high and high school, I did MMA, Ride dirtbikes, college parties, drive, i smoke weed and cigarettes even though i know thats the last thing i should do, and have a normal sex life.. I never had a problem finding a girlfriend and actually my mother calls me a whore because i date a lot of girls..
So basically i dont let my medical condition interfer with my life.. Ive had over 20-25 surgeries, lot of different doctors, spent my younger years of life in a hospital, im in doctors manuels and been referenced in medical books, a lot of pain medicine, youngest person with the biggest blood clot in my lung, getting broncitis is very easy, a lot of scars thankfully not my face or head in general because i learned very quick to guard my head, plus i gotta keep my cute face looking good lol..
So all-in-all.. Have fun in your life even if you have a lot of obstacles.. you only live once so have fun even if your in pain.. you dont want memories in 50 yrs of you watching tv and popping vocodin all day.. I try to be as normal as i can be.. At times it seems very hard to be normal and sometimes make you depressed, but thats me having a bad day.. My other 6 days out of the week im very happy and always playing around.. It takes a lot to make me mad and ive had my fair share of fights in high schoo.. i won 5 out of 6.. lol.. that guys was 4 times my size and i never back down.. its even hard for me to get scared.. i can sit down fof a hour an only think of 2-3 things im scared of.. one being, i never want to leave my friends, brothers, and my 2 very beautiful nieces..
If you ever want to take or whatever you can always feel free to talk to me or ask questions.. on facebook just type in Russell William and im from San Diego.. or email me: Ford_saleen_mustang05@yahoo .com
May 17th, 2012 at 2:25 pm
Sarah, I wonder if you’ve seen this article from the Official XBOX Magazine: http://www.oxmonline.com/healing-pain-through-videogames – by a fibromyalgia sufferer.
May 29th, 2012 at 3:15 pm
i am so sorry!
i dont say this out of pity. i say this on the count of i know what your going through. i was also recently diagnosed with ehlers danlos type three hyper mobility. i am only 16 and am in so much pain i often cry. i have been told all my life that things will get better. i had this pushed off as me being born early. i was often called a liar and a cry baby because no one would believe me. its was like a slap in the face knowing i will only get worse. i recently had to go the the emergency room because everything hurt and i had several things dislocated to the point were i could barely walk.to be honest the idea of one day being wheel chair bound scares me. i agree with the fact that people with this can never win! you walk to much and you hurt. you dont walk and you hurt. most days it feels like nothing can stop the pain were in and it is very depressing.there is so much i want to do with my life that i know that i can’t do. i have always wanted to join track but i was told that was like asking to be sent to the hospital. there are so many limitations that make me feel like a freak. like a human defect. how do you cope with knowing what you can and cant do? but its people like you who give me hope. you are so positive about this syndrome and maybe one day there will be a cure. its very comforting to know that others go through this as well and im not the only one. i know how hard it is some days. in my school there are four floors and i get dirty looks when i take the elevator. we may look fine on the outside but just because im not on crutches doesnt mean im in pain. most people dont understand that were not just lazy. but in pain.
June 5th, 2012 at 7:09 am
I am 55 years old and finally got a diagnosis a few months ago!!! I am in constant pain and can’t move without sounding like a bowl of Rice Krispies…Snap, Crackle, Pop! I try to make light of it sometimes but it’s only my game face. I am having a hard time finding a good doctor who knows enough about EDS to treat me and help me with some of this pain. I live in Virginia and was wondering if one of your readers know of a good doc who is familiar with EDS. Thanks.
July 1st, 2012 at 2:34 am
Thank you so much for this post. My girlfriend of half-a-year has EDS, and this is the first article I’ve read on the subject that I could really understand and helps me further understand what EDS is all about. She’s explained it to me before, but this really helped it to *click* and to help me understand what things will be like for us when we start living together and as the years pass. So, thank you, Sarah. Thank you.
July 3rd, 2012 at 8:02 pm
[...] Michael Jofe, Joe DiMaggio Children's Hospital: "Here …See all stories on this topic » If you like to read an interesting articles, these are what I’ve found for you: Thank you for the…uys, It looks like I need scoliosis surgery, and I am scared. Have any of you had it? How did you [...]
July 9th, 2012 at 11:03 pm
Dear Sarah, reading your blog I can understand how helpless you feel, I myself have lived with this condition all my life and I was only diagnosed july last year with type 3 hypermobile EDS …..i have had years of dealing with being told things were just in my head, however i have just kept going I never wanted to find out but at 33 i needed to i have a son and my mum has suffered for years but i wont go into that ….when i was a baby my mother took me to see a DR ann childs shes still alive too….shes in london and the best in her field and i was miss diagnosed so long story short came to aus got sorted have long term care plan with dr and i just keep going…..being blunt maybe to you or everyone else im not sure i do as i please if it hurts i tell myself im lucky i know and im alive…i get tierd cranky sore sometimes i cry but on the whole i do my best …EDS is what it is its a genetic flaw and like it or not i am not gonna let it beat me i have started taking collagen tablets and have noticed i have less spasms which is better i changed my life style a little i plan things more, so Sarah find strength and dont let it beat you.. we cant change things for us but we can help each other.
Kindest regards Nic
July 19th, 2012 at 10:53 am
Hi to all courageous people with EDS
I am a Registered Nurse, I don’t know what Ehler Danlos Syndrome till I attend a presentation. Unfortunately, one of my class mate is affected with this and she was delivering the presentation. Before presentation for a while I browsed in the internet and when the presentation started by her in the class I am actively involved in listening. I noticed a kind of “Inspiration, Courage, in her living with EDS”
She waas very inspirational and self-motivated, hard working with this condition. I would like to extend my hand to help and support her throughout the life.
Oh!God bless her and all people with EDS………..
August 11th, 2012 at 3:17 pm
Sarah,
Thank you for sharing this story, your story. Thank you for maintaining this blog. I “found” you last night while I was hunting for EDS resources. I live in the SF Bay Area and have had a very difficult time finding a doctor who is qualified to evaluate me for EDS. I know I have a connective tissue disorder, it’s been obvious to me for over a decade. I am 23 now. I just need an diagnosis so that other people (family, friends, doctors, my formerly lovely therapist!) might take me at least a tiny bit seriously. I downplayed my concerned and my symptoms for many years, but no matter how calmly I discussed my concerns (or observations, really) it was always a little too calm, and the doctors would say “sounds like a connective tissue thing…I learned about that in med school but hmm, don’t remember it now….oh but that won’t kill you, you’re just very flexible. You’d need a specialist to look at you if it became a problem down the line”.
It’s a problem now. (vascular, I think/fear)
And I can’t find a specialist who works with my insurance, is relatively local, and doesn’t sound like a pompous d-bag. Each time I meet a new doctor I am terrified to hear “it’s all in your head”. No doctor has flat out told me that (they can probably sense I would not respond so well to that kind of quackery…) but I can read between the lines. My biggest mistake was getting caught up in the world of psychiatry/psychology within the past few years, because now nobody takes me seriously at all. I’m just a crazy psych patient, so any physical symptom I exhibit/report must be psychosomatic in origin. Riiiiight.
And my parents are 2 of the least reliable historians in terms of family medical history. So…yeah. Thanks for the resources you’ve provided on this site, I’ll be sure to check them out. If you have any names of doctors in the area who might be able to see me or at least point me in the right direction, it would be much appreciated!!
I hope you are doing as well as possible for you and your hypermobile body….I know every day must still be a struggle, but you are amazing for staying busy and pursuing all the “other” professional and personal endeavors that your whacked out collagen can’t stop you from doing. Good day, and good luck! Sending you hugs and positive thoughts (groan..cheesy, I know) from across the bay.
Steph
August 22nd, 2012 at 9:39 pm
First off I’d like to say, thank-you for posting this, the more people that spread the word of this disease the better. Also, it’s always nice to know there’s other people who understand what you’re going through, unfortunate that they have to suffer though. I have EDS-hypermobility type. Unfortunately for me, I’ve had symptoms since I was about 4, I’ve never really experienced pain-free days in my entire life, so to be honest I’m jealous that you got the opportunity to have them. I’ve had countless doctors dismiss my symptoms as something psychological or false, only just recently when I found out about this disease was I able to convince my doctors that I was indeed sick and that I did have EDS. I’m only 18 and already losing the ability to walk, I can only type for a couple minutes a week, if I do more I simply am unable to use my fingers for anything for weeks. When you are physically unable to go to school or work it’s pretty upsetting. But how I see things everyone suffers and enjoys life equally, us who suffer through more painful things are more appreciative of the good things, kinda hard to explain but this is what keeps me going… Since we have to suffer so much there are going to be some wonderful moments in our lives to compensate. I really do wish though that I could’ve had late onset of symptoms so I could’ve went to university and gotten an education. However, it must be much more devastating having your body so quickly fall apart, I’ve always known mine was deteriorating so finding out the extent of it wasn’t as crushing for me. In a way we’re almost lucky, odd as that might sound, we learn early on how to enjoy everything to the utmost, whereas some people watch their life pass by without being able to really say they enjoyed life… Isn’t it amazing how such a tiny piece of DNA can have such an enormous effect, life is such an incredible thing. I’ve had quite a bit of enjoyment out of this illness, doing martial arts awhile back no one could pin me or cause me much pain, seeing their confused expressions were very amusing. Also, recently I wrote out a list of all my symptoms, although its still incomplete its 4 pages long, every time I showed it to a doctor, their expressions were priceless. I’d like to finish by saying, don’t let anyone’s negativity towards us drag you down, if they suddenly traded bodies with us on one of our bad days I don’t think they would live through it, they’re only rude because they are bullies: people who pick on others in order to self validate. We’re stronger than they’ll ever know or that they’ll ever be. Keep on galloping fellow Zebras.
September 29th, 2012 at 8:08 pm
Thank you for posting this, it was nice to see things from another point of view. My son and I were recently diagnosed with EDS Type III but as for many here, it was connecting the dots after many years and many doctors. It was finally my own research that led me to have both of us evaluated by a geneticist a couple hours from us. She confirmed it for us and it was actually a relief in a weird way, to finally have a name for all of it. I have been showing various symptoms since I was born, as had my son, now 20 years old. I just thought it was normal, it was normal for me, right? ::sigh:: His progressed faster than mine had, probably due to all the sports he played in school, all of which ended after a season each due to injury. Big surprise. I am lucky for the moment compared to him, my joints are loose and unstable and cause a lot of pain, but he has multiple joints dislocate daily and has even more pain. I try to stay positive, I get sick to my stomach if I think about it too much. I try to remember my frame of mind before we knew and how we both just tried to deal with it day to day and keep that in mind. I do sometimes think about going back to the most obnoxious doctor we had though. Jerk. Ran a few tests, mostly just patted us both on the behind and sent us on our way. Finally got frustrated and told me that he thought my 10 year old was just too dramatic for his own good and didn’t like school and I was just pandering to him. Ok, that’s enough from me. lol. Thank you again.
October 14th, 2012 at 4:33 pm
I love it! I have EDS-H and am currently doing research for a school project trying to educate my health class about why I can’t exercise like they can. You explained everything so well!
October 16th, 2012 at 8:04 pm
My wife has had many of the symptoms of hypermobility EDS and recently one of her pain managment docs suggested it could be EDS but no one here is wiling to do the testing to diagnos it. It’s frustrating. Was there something you did or said that convinced your doctors to finally do the needed testing to diagnos?
October 17th, 2012 at 12:41 pm
I went through probably a year’s worth of different doctors and tests that yielded nothing before I finally insisted through my HMO that they send me to a geneticist. The geneticist did two consultations with me (the first with two of his nursing staff, the second with him), and they ran the test at the second appointment. I don’t think there was any one thing I said. It was just persistence. I do remember them telling me something I already knew, which was that the test is not 100% reliable. It can come back negative and you can still have EDS. I remember my response was that I didn’t care — that even the chance that I could get confirmation that this was what was wrong with me was worth doing the test. Knowing what’s going on with your body is half the battle to overcoming it.
November 10th, 2012 at 8:34 am
I was diagnosed with EDS 3 when I was about 12. I was “the kid who can twist her arm all the way around and bend her fingers all the way to the back of her hand”.
November 10th, 2012 at 9:13 am
I was diagnosed with EDS 3 when I was about 12. I was “the kid who can twist her arm all the way around and bend her fingers all the way to the back of her hand”. I remember waking up at night as a 6 yr old crying because my legs were hurting so bad. My mom didn’t know what to do other than wrap them in a hot towel and hold me til I fell asleep again. As i got older, she knew something was different and thought maybe i had juvenile arthritis. Several doctors later and also finding scoliosis and a heart murmer, they finally gave us an answer. I went through therapy twice for dislocated shoulders, and tried different chiropractors to relieve my pain, but haven’t found anything that actually works. As a pianist and music teacher, the last several years has been extremely difficult. I used to be able to sit and play the piano for hours on end.. but now, 20 minutes feels like I’m dying. I tried a career change about 3 years ago… working in a dental office. That was a mistake. When I finally accepted that I couldn’t assist patients any longer , they stuck me in the back office. But still, sitting all day bending over a computer with a phone cradled on my shoulder… I couldn’t handle it anymore. My coworkers didnt understand. They called me a hypochondriac and basically told me to suck it up. It’s so discouraging for people to look down on you because you suffer from chronic pain. Not only was I exhausting myself trying to keep up with work, my self image was smashed into the ground because I listened to what other people said about me. I wish I would’ve done more research in the beginning. Maybe I could’ve prevented some of what I went through.
I am married now and my amazing husband, although he can’t understand my pain, is sympathetic and helps as much as he can. We bought a new mattress to help me sleep, and he buys me massages to help relieve the pain temporarily.
My biggest concern, and my worst fear, is that when we decide to have a family, I will physically be unfit and unable to care for my children properly. It’s so scary to think how hard it is now just to get out of bed in the mornings.. and I’m only 22. How will I be able to wake up at all hours of the night and care for a baby..? How will I be able to hold my child and carry he/she around..? If there was a way to rid myself of the pain, I would jump on it! But, even if there was just a way to just keep me going for the sake of my family, without constant pain pills, I would be fine. I just want to be able to live somewhat of a normal life…
November 21st, 2012 at 3:38 pm
Hi Sarah,
I’m also a Bay Area librarian with EDS (Hypermobility Type). Your blog entry came up in a search for physical therapy resources. Do you know of any good physical therapists? I’m in Oakland, but could travel a reasonable distance to see a PT who knows about EDS.
Kim
November 21st, 2012 at 3:45 pm
I had a few good experiences at the Asher Clinic in Larkspur: http://www.physiocorp.com/facility/35163/LARKSPUR/CA/Asher-Clinic They have offices all over, too. I had a ton of *bad* PT experiences, so I won’t list the many horrible places I went to. When you come in with EDS and the first thing the therapist says is “Let’s limber you up!” that’s when you walk out the door.
December 27th, 2012 at 7:18 am
Thank you so much for sharing your story! I have been dealing with chronic pain (and much more) for 11 yrs. It has stolen my career (all those degrees!), my social life, and any quality of life–and what a life I used to have. I just got a diagnosis of EDS from a geneticist a month ago. I would never have known if I hadn’t developed keratoconus, done my research, and found the connection between EDS and this degenerative corneal disease. In essence, I nearly diagnosed myself. I guess all those degrees paid off in the end. I have symptoms of both Classical (2) and Vascular (4) EDS and am awaiting genetic testing. Flip the coin. I’m so sick of being sick that I am questioning if I even care.
I felt compelled to comment because I know you do your research as well (a librarian!), and so appreciate the information that most people become symptomatic in their late 20s (I was 27) and many are misdiagnosed as having fibromyalgia, That’s me! I have gone through so much of what you touched on, like chasing the snake oil salesman (what I call it), but with the wrong diagnosis. My body has been getting worse over the last 2 yrs. and now, after years of learning to accept my (wrong) diagnosis that so many think is a mental disease, I am steaming MAD! I am going though a reprocessing of sorts with having to remove fibromyalgia from my life; it’s a very odd experience as self-identity and chronic illness are so intertwined. I hung onto every word you wrote, so please keep posting! Never be afraid to share your health issues; those who can’t deal with it don’t belong in our lives. Take care…
December 31st, 2012 at 12:04 am
Hi, my name is Karlie and I am seventeen years old. I was recently diagnosed with EDS type 3 which can commonly be compared to classical EDS. I am still very confused about all that goes on with EDS and at times it scares me. So recently I have been looking online for some answers. I am also looking for some sort of blog to follow and see what others have to say about living with EDS. So as I was scrolling down my google page up popped your blog! It brought tears to my eyes to read your blog and see that someone else is trying to gain support too. I wish I could find a way to team up with others and make EDS known and help find a cure. Thanks so much for blogging this! I am inspired to write my own!
Karlie
January 5th, 2013 at 4:44 pm
I was interested in you page. I know what you are talking about. I’m 55 and have EDS. In the last 5 years I have ripped, tour, four muscles. (And not small ones.) This last one is in the knee to the groyne. The pain is out of this world. 10 we are talking a 100 on that scale. We still do not know witch side of the family myself and kids and grand kids got ti from. The joke in the family is I got the bad end of the gene pool.My granddaughter at the age of 3 had to have neck surgery because she had riped the ten dents, She spent 18 months in a halo.But at age 19 now is doing very good. I have found a Doctor that understands what I have and lessons to me. I had a joint in my hand fixed. and the best thing is I still can move it.
Will I’m glad that you have this page. More people need to know what we go though everyday. I’m just so sick of people saying “just suck it up”
If I had a nickel for every time someone said that I would be a millionaire.
Will Thank you.
Rochelle Reiners
January 6th, 2013 at 10:21 pm
My name is Heather. I’m 19 years old and was diagnosed with EDS when i was 15. My story is a little like yours, but different (as all stories will be). My shoulder is what gave me the most trouble when i was younger. I had been to just about every orthopedic specialist in Iowa and many in Minnesota, too. After the head honcho at DMOS in Iowa told me it was all in my head and i was dislocating my shoulder because i enjoyed the pain and attention (i was unimpressed with this diagnosis. Pissed, actually.). So i went into super depression mode and gave up. You do not tell a 14 year old girl that she is crazy and she is causing the pain that is running her life cause it doesn’t go well for her. So a year later, i tore my ACL, LCL, and MCL playing softball and my physical therapist read through my file and suggested i get some medical testing done. I was diagnosed with EDS three months later. I sent that “specialist” a not-so-nice email, which was jouvenile, but as previously stated, i was pissed. Not to mention i had lost almost a year of my life because i was so depressed and frustrated that no one could figure out what was going on. Needless to say, i was not his biggest fan. Because of all of this, i am now enrolled in college as a pre-med student with an interest in genetic diseases so i can prevent other people from the horrible experience i had.
I feel your pain in being afraid to let people in on this little secret because it’s kind of scary. Not knowing how people are going to treat you is what scared me the most, but i had some amazing friends and mentors and teachers who helped me through my tough times. I’m glad you have a good fan base! Thank you for sharing your experience.
Heather
January 11th, 2013 at 2:48 pm
All I can say is your story is mine also. Misdiagnosed with many things only to finally get the true EDS diagnosis 10 years ago and all the puzzle pieces fell into place and it all made sense. EDS is a systemtic disease which makes it so hard for just one doctor to try and treat. Since you posted this in 2009, can you give us an update on how you are doing?
January 14th, 2013 at 5:37 pm
Hi Gwenn. Thank you for sharing your story. I subsequently posted updates in 2011 (http://librarianinblack.net/librarianinblack/2011/05/eds.html) and 2012 (http://librarianinblack.net/librarianinblack/2012/05/eds-2.html). Doing much better, off of all pain medications, thanks to dietary changes, lifestyle changes, and a very strict exercise routine that keeps things where they should be. I still hurt, all day every day. But I’d rather feel that than deal with all of the side effects of the medications. I am also looking into some upcoming experimental stem cell research (AKA being a guinea pig) and if I participate, I will keep the community updated in so far as I am legally allowed to do so.
January 31st, 2013 at 3:39 am
My daughter has this and also has the very rare form of tenaxsin X Factor. It is a vascular form. Thank you for your sharing and educating others!! As with any disease you must educate yourself on the disease and every bit of information you can. You must them be your own advocate which is the hardest of all! I feel the other important thing is to do all the prevention and follow through care you can. Sometimes you get tired of going to the doctor or having another test. But it is this flow through that will catch things early and prevent many other things along with I creasing your quality of life. No matter how bad it may be you can have a wonderful life and have meaningful relationships that make it worth it. Sometimes we become out own worst enemy or our biggest obstacle. Also talking and being with others who are going through the same or similar things cause help so much and provide such strength and support. I also have a rare autoimmune disease so I go through it daily. It will make you humble and you learn to give up control but still be strong. Also using your experiences to help others is incredibly rewarding!! I also truly trust in The Lord and this provides not only a inner peace that is indescribable but a strong advocate to lean on. Good luck to you all. Hope this helps in some way.
February 10th, 2013 at 5:33 pm
I too have EDS type 3. Your story is my story and the fact it was written may 29th which is my birthday is some type if sign I think. Hope your still holding strong my fellow rubber pal:)
Paulajs75@hotmail.com
February 25th, 2013 at 1:32 am
Hello,
My name is Madeline and I also have EDS. I am 18 now and I found out 4 years ago. After tearing both ACLs, a meniscus, and breaking my foot, along with numerous sprains and a year of physical therapy in 5th grade to get my shoulders to stop popping out of place, I can say that EDS does take it’s toll. I am going into some personal training to try to strengthen my muscles to prevent further injury. You said that you have children. The numerous websites talking about EDS say that it can cause the membrane around the baby to rupture prematurely. Did you have any problems having children? I guess I’m wondering if I should be scared.
Nice to hear the story of a fellow EDS’er
So sorry to hear about your pain and I hope that there is some way to ease it.
Sincerely,
~Madeline
February 25th, 2013 at 12:30 pm
I do not have children, and won’t have them. The concerns about pregnancy and EDS are very real though.
March 3rd, 2013 at 9:45 pm
Hi,
My name is Jeneine in June, after 7 months of being dizzy I was finally diagnosed with POTS (Postural orthostatic tachycardiac syndrome) from the blood draining to my feet and legs and not returning to my head. When I was in a lying positon my blood pressure would be around 110/80 and my pulse would be around 90, when they would take me to a standing position my bp would drop to 80/60 and my pulse would shoot to 120. They put me on blood pressure medications to raise my blood pressure, which in turn dropped my potassium to near emergent levels making me have to be on potassium medication as well. Because of my beighton scale I was diagnosed with EDS at the same time. They believe that is the reason for all of my joint pain and why at 18 I had 2 herniated discs. I also get very bad migraines. I’ve had headaches since I was in high school, but they did a genetic test and I have a mutated gene. The gene is MTHFR. It is genetic just like POTS and EDS. I’m trying to find out if there is any relation between the three, haven’t found it yet, but I wanted it out there. This mutation effects folic acid, b6, and b12, which in turn can effect so many parts of the body. I hope this helps anyone, and I’m new to this and don’t have anyone else with me in my battle so any help or conversation or friends are welcome!!
Good Luck,
Jeneine
March 12th, 2013 at 5:09 pm
Although I’m not a long time follower of your blog, I have come across your blog before as your some what of a celeb in the log world. I am glad to see you using this blogging to bring awareness to a quite literally invisible disease. From one Zebra to another.
March 14th, 2013 at 1:53 pm
Hi,
I also have eds, you might want to see dr. Frankamano, she’s great, I think she’s in Baltimore. About pregnancy, my mom was fine and then she had 3 kids, only after the 2nd one was she diagnosed with eds.
March 19th, 2013 at 9:52 pm
Hi,
I am new to this and finally coming to terms with severity of this progression. It’s been two years but in
last year my back has desiccated I have herniated and bulges and tear in multiple ares polyarticular arthritis and hybermobility eds as well as inheriting a bout of depression related to all this happening…which was only supposed to be a tear and bulge disc now I have this. I have declined so much recently that I’m willing to try anything. I honestly have no less than 3 appointments weekly and that to put it lightly I’ve had up to 3 in a day and I know this has no cure but just for once I’d like to hear some good news and to the point where my Dr is urging me to be on permanent disability. I was just looking for someone to talk to. It’s very upsetting to me that I have to lay in bed until my pills kick in so I can become useful. I would love to talk more although like u stated about u have good and bays.my hands cramp up also which renders me virtually useless. I’d like to get some type of advice or perhaps you know where to go to join support groups. I am 28 and am very worried about the whole wheelchair thing and I truly hate relying on drugs to get thru my day. My! husband carries me up the stairs to bed and has been very supportive but do u know if there is any physical therapy references or diet for eds… I willing to try anything! In conclusion I’m sure I have put much more wear and tear on ly body serving in the army for years and currently in the national guard (ca) Im trying to look into get medically discharged asap but like anything in military its hurry up and wait… Any advice or just a few words of encouragement would be greatly appreciated never seen or heard of any one with this syndrome but I’m scared to death as my mom was wheelchair bound by 30 related to multiple sclerosis..any drug suggestions that help u would be awesome… Physical therapy ..any tips would be welcomed and appreciated…thank you
March 20th, 2013 at 12:24 pm
I would suggest looking for a local support group. I am part of a Northern California EDS support group on Facebook that is very helpful. Talking your issues out with others is hugely helpful. There will always be good days and bad days. You will feel better sometimes, and worse others. As for drug recommendations, I hesitate to make any. I worked very hard to get off of all drugs because I didn’t like the side effects on my body and my mind. That means that I do hurt every day, but less than I did with the pain medication, amazingly. If you can find a chronic pain specialist who you trust, and pursue alternative treatments at the same time (physical therapy, meditation, diet changes, etc.) I think that will be the most successful combination for you. Good luck to you!
April 3rd, 2013 at 10:32 pm
Thank you for writing this. I also have EDS and i felt like i was alone most of my life with this disorder. I was 13 when they told me I had EDS. At first i didn’t realize how much this would affect my life but that changed a lot when i got my wheel chair and walker. I had to be home schooled due to the fact I could not sit in the class and focus when in so much pain eventually i gave up on life for a while. It killed me not to be a normal teenager. But one day i realized i wasn’t the disorder, I was a kid. I couldn’t give up and i didn’t I had to keep trying my best. I am 17 now and trying to figure out what i want to do with my life.
Recently i got of all of my medications due to all the side affect. I try and do thing with nutrition and mediation. It seems to help a lot more than the meds ever did I can think clear and focus on what I am doing.
April 8th, 2013 at 4:28 pm
I also have hyper mobile EDS, though a less severe form. I wanted to thank you for educating people about something most don’t know about. It is shocking to see how many doctors just assume the pain is in your head. It’s sad that there is so much research to cure other diseases, but nothing for EDS. However, you never know when someone can discover a cure, so keep your hope up. Thank you for posting this.
April 9th, 2013 at 6:24 pm
Thanks Tucker. The more people who speak up, the more educated the world will be.
April 29th, 2013 at 12:22 pm
Thanks so much for writing this. I was diagnosed with EDS3 age 40, after 2 years of agony from a partially dislocated SI joint. This is a really great bit of writing and can only help spread awareness.
May 12th, 2013 at 3:26 pm
i’m so sorry i know you said no pity posts but i can’t help it. i hope you get better. this sounds really painful
May 15th, 2013 at 12:02 am
Hello Sarah; I am so sorry to hear that you have this. To be perfectly honest I have the way less severe version of this. My rheumatologist never gave it a name; just that my body produces too much collagen and it makes my joints move too far and than I hurt. I started having symptoms in early 2000 and I was only 15 at the time. No one really knew what was wrong with me; first I had x-rays; then I had CT scans then lots of painful blood work and cortisone injections. I have seen many many specialists and was told it could be anything from a rotator cuff issue to cancer. Yes my drs told a 15 year old me I may have cancer, but thankfully it wasn’t that. I’ve been told I have drug seeking behavior because I tried to tough out the pain for a few years and it just got to the point where I couldn’t anymore. So after not seeing anyone for at least 3 years I finally went into a rheumatologist thinking it was just simple arthritis. He ran an obnoxious amount of tests; everything from lupus to HIV….yeah I wasn’t too thrilled abou that one. Luckily all the tests came back negative or normal. And that’s when he told me I have a genetic issue; he sated it wasn’t as bad as ehlers danlos but it’s was along the same lines just much more manageable. I am taking pain meds twice a day (nothing compared to what you have to do) but I’m still getting used to it and if I miss one dose I’m in the most intense pain I’ve felt in years. It seems my body is getting a little dependent on having something to manage the pain. Up until recently I’d only been taking your over the counter ibupropehn; I would take 6 at a time but still; my dr switched me to Celebrex and while I’m not thrilled to be taking medicine everyday I am very glad to finally feel what it’s like to not be in pain every waking moment of the day. I may not know exactly what you’re going through; but I do kind of get it and I also wanted to say that you’re a true inspiration
May 20th, 2013 at 7:14 am
Sarah, I see that your post was written 5 years ago. Hopefully, in the mean time, you have found something to help with your constant pain. If not, I have a suggestion. Let me back up to say, I also have EDS. My greatest constant pain derives from the fact that, as my neurologist says, my spine “looks like I jumped out of an airplane for a living.” Herniations, ossifications, calcifications at all levels of my spine. The nerve irritation and impaction at all levels results in nerve inflammation and nerve pain through-out my body. Everywhere those nerves travel. I tell you this as background info to my suggestion. Approximately 5 years ago, I began using two in home traction devices: 1) a full body inversion bed, and 2) an over the door neck traction devise. Both devices separate my spinal discs to temporarily relieve some of the pressure on my spinal nerves. Neither process is pleasant. However, both process provided almost immediate results for me. From the first use, both processes provided a tiny period of reduced pain after treatment. This encouraged me to continue using these traction devises. Over time, I found that the periods of pain relief following traction grew longer. It turns out that the traction actually allowed the inflammation of my spinal nerves to subside. (So, although the herniations, ossifications, etc were still there, the nerves themselves were less inflamed. Therefore, the nerves could travel through these irritants with slightly less impact.) Consequently, the periods of reduced pain following traction grew to be greater and greater. Now, 5 years later, I still use the inversion bed daily. However, with it I am usually able to control my pain to the point where I can be upright most of the day & evening. So, if you have not found your own pain solution, you may want to google “inversion bed” and see if it is something that meets your needs. (There are a variety of types on the market now. I don’t have any particular recommendation, other than make sure it is stable looking. I tried one at a sporting goods store that was really wobbly and scared me.)