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