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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):

Eds1 Eds2 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!)

“Hello. My name is Sarah, and I have Ehlers-Danlos Syndrome.”

  1. Dinah Everton Says:

    Thank you for posting this informative article. I was unofficially diagnosed with Ehlers-Danlos in February, as well as Marfan Syndrome and scoliosis. I’ve been symptomatic for some 4 years, and it is a relief to know that I’m in good company. I’m 11 years of age, you see, so it really scared me when the school nurse told me I needed to see a doctor. I went, and I was diagnosed. I’m going to Children’s Hospital on the 2nd of July to be officially diagnosed, and to see what can be done as for my mental disorders. Thanks again for this wonderful article. I stumbled across this when trying to find an article for my friend, to explain to her what Ehlers-Danlos was after our art teacher was suddenly hospitalized due to it. She now understands, so I give you profound gratitude- from the bottom of my heart,

  2. Sarah Says:

    Dinah – Thank you so much for sharing your information. You are extremely articulate for an 11-year-old and have a much better grasp of EDS and what it means than I did when I was diagnosed in my 20s! To me that says you’re on the right track…asking questions, doing research, reaching out. If I can help in any way, let me know.

  3. Lori Broughman Says:

    Just a very brief comment…I haven’t had a chance to read all the above comments, but I definitely bookmarked this! I just found out about Ehlers-Danlos about a week ago – by myself of course, and am now working up the nerve to bring the subject up at my next Doctor’s visit. I think this could be what I am dealing with. Thanks soooo much for posting your story! I actually went on disability a while back – although they want to review it after 3 years from my original award date, so I don’t even have the comfort of knowing I won’t have to fight that battle again in a little over year. I actually just turned 43, but have been suffering from multiple issues for 20+ years, surgeries, pain meds, you name it! Thanks again!

    Lori

  4. allison Says:

    Hi love the site and sorry to hear about your illness

    Just two new things to note

    EDS is now no longer considered rare – it is just rarely diagnosed

    secondly you do not have to have stretchy skin or hypreflexible joints to have it now either under new diagnostic criteria.
    Finaly hve yu had your blood volume tested? low blood volme can also be a feture of EDS as well as POTS /OI and can lead to lot of problems too.

    cheers

    ALly

  5. jen Says:

    My beautiful sister forwarded this to me. Her fabulous son has been experiencing EDS. Its fitting many of our family symptoms. I totally understand why she was intensely crying now…This is our Family. I cant recall a day w out pain. But, I do have great days…Smiling and Giggling makes a day! THANK YOU for sharing your story. It made me cry too, but makes me feel so less alone. Im never lonely..just sometimes alone. As an avid writer…you have put words to my life. Alwaus grateful, Jen

  6. Lindsay K Says:

    This is such a great article! Thank you! I too have EDS and so does my 6yrs old daughter. Do you have any suggestions for a good mattress? I have horrible back pain every morning. Thank you again- Lindsay

  7. Sarah Says:

    I sleep on a Tempur Pedic mattress and love it: http://www.tempurpedic.com/tempur-pedic/Beds.asp. I have recently experienced an all-latex mattress that also seems to work well with my body: http://www.thenaturalmattressstore.com/products/all-latex. Both choices are expensive but are worth it for a good, pain-free sleep every night!

  8. Jennie Linton Says:

    Dearest Sarah,

    Thanks for sharing. I’m sure this has made more people aware of EDS and in turn has helped their loved ones understand more informatively. I have MCTD, scleroderma, lupus, fibro, polymyosytis and much more that hasn’t been identified yet, am in pain daily. I try to do as much as I can while I’m here and appreciate my husband and family for their education and care of me too. I can identify with you on many levels and I think you’re very special and you should be commended for your loyalty to life and living. I think it’s best to stay busy, as you do, for the time we have. God bless your heart and thank you again for your sharing. Enjoy your time with your wonderful family and I will with mine.. Know that you are not alone. My dear friend Margieanne Moskiwitz has EDS, but having a hard time dealing with it, but a loving husband to help her. She is a world renowned artist and used to do hand free silhouettes, hence the word used to. I’m sure she would love to hear from you. Again, thank you and God bless you always…

  9. William Wolf Says:

    Hi, I have EDS type 3 and I just wanted to say thank you for doing all the research you did. I am currently looking for a solution to best help my issues with joints among other things. I’m trying to find research on the possibility of using HGH to increase muscle mass which hopefully in turn would help keep my joints in place. I am a martial artist and, being the grandson of a 100% Japanese woman, have been studying martial arts since I was 4. At this point my joints have dislocated so many times that I occasionally can’t tell when they are in or out. Lol, funniest part though is the ability to wiggle out of any lock anyone tries to put me in has given me the nickname “Little alien”. My mother being the “Big alien” is the one who gave it to me and we match in severity. My kid sis has slight hypermobility but not like Mom and I. Never the less, back to the point of my post thank you so much for sharing your knowledge and resources of education. Know that you are not alone and that I, even at the young age of 27, share your daily pain and abnormal schedule of extra horizontalness just to relieve the pain. i’m still hoping for a cure or some form of relief with these great technological advancements. I wish you comfort and happiness!

  10. beth gray Says:

    Thank you for the information. my dr said that im boardline eds he cant tell if I have it or not. For the past 2 yrs I keep having trouble with my ribs dislocating. It seems to be getting worse. I did about 2 months of physical therapy which did help but they found out my shoulder has Arthritis that has my rotary cuff pinched. currently im having steroid shots put into my shoulder but my ribs are alwauys dislocating. Is there any treatment that really helps your ribs stay in place. Do they make a brace that helps. I live in a small town where the drs here have no clue what to do with me. please any thing you can recommend would be so appriated

  11. Sarah Says:

    Beth Gray – I have found a few things to be helpful with the ribs. First and foremost was getting regular chiropractic care to put stuff back as it popped out. There were a few years where I was going 1-2 times a week. Yes, that’s expensive. Second is building core strength. Work with a personal trainer or physical therapist on this making sure they understand EDS and its effect, as well as your goals. Third is simply knowing your limits. Reaching up for something on a high shelf is a bad idea. Twisting and turning is also bad. I used a torso brace for a while, but as with all braces your muscles in that area atrophy as they come to rely on the brace and then you’re worse off than you were before. The best thing is to slowly build muscle strength, be careful, and use ye olde chiropractor in the interim. At least that’s what worked for me. Best of luck!

  12. Chelsea B Says:

    Sarah,

    I am 21 years old and in my final semester of college.

    I do not know what accelerated my condition from entertainingly flexible with occasional dislocation to multiple dislocations a day and chronic pain, but over the last couple months this is exactly what happened. I saw multiple doctors with a variety of suggestions from “growing pains” (ridiculous, I’ve been 4’11” since middle school) to “it’s psychosomatic” until one suggested EDS. He then tested me for everything else under the sun to rule out auto-immune and the like. I am now on a waiting list to see a specialist he referred me to to be able to diagnose me but it doesn’t look like it will happen until next year. Any and all advice on how to get into a doctor that can help me would be appreciated.

    EDS is a direct fit. But my current physician doesn’t know enough about it to diagnose or help me.

    I found your blog by searching for “EDS ribs” because I have also had the same experience from ATTEMPTING to sleep.

    Any and all advice would mean the world to me. I’m desperate.

    Thank you for your blog showing me that I’m not crazy as I can already relate to a good portion of your symptoms.

    Chelsea from Michigan

  13. Sarah Says:

    Chelsea: Your best bet is to wait to see the specialist. The first specialist we are usually referred to is a rheumatologist. That person may or may not make a diagnosis. Most of us end up then referred to a geneticist, who makes the final diagnosis. I don’t know what your health care plan is like so I really have no suggestions on how to speed up the referral process. It is frustrating to wait, but because EDS is a syndrome without any cure or real treatment (except for isolated symptoms), getting a diagnosis is a formality. It won’t give you access to a way to feel better right away or make the symptoms go away. It might make your doctors believe you more readily when you describe pain, or refer you to physical therapy earlier, which is great.

    Best of luck and let me know if there’s anything else I can help with!

    ~Sarah

  14. Eileen Says:

    Sarah
    Thank you for putting into words MY dail life. I too have type 3 EDS and it is difficult for those around me,bespecially my family, to understand. I went from hiking Break Neck Passs, 11,500 ft, in the mornings and mountain biking Browns Pass, 11,000 in the evenings with my dogs. In the winter, the same routine with snow shoes and a snowboard on my back. Durring the day I owned and operated a Pharmacy I started from scratch 15 years ago in a small Colorado town. I had mutiple sprains and mild dislocations all my life and was called a clutz. My siblings teased me growing up and my patients place bets on what injury i will return to work aftrer the weekend with. In 2007 my internest diadnosed me with EDS and for the first time in my life i was not accused of being a drug seeeker. How embarrassing is rlthat? Waiting to see thre spaecialists, conning a friend to drive 200 miles round trip to get ke there, trying to maintwin a professiomnal composure as i heald a tissueto my eyes constantly to catch the tears. To then have the same xrays or mris twken as the last dr. They then say “i dont kbow why you are here? Your hips couldnt possiblly be in that much pain if you can bend tgem that far. You arent getting any medications from mebut i will give you an rx for PT. How embarrassing. I am a pharmaciist and i own my own store. Doyou really think i would be dr shopping for prescriptions? So off to pt where they put me into pilates classes. Long story shortt, too late, my sacrum had completely seperated from my pelvis. I had learned many meditation and other techniques for controllingvthe pain, in addoition to medication,bto be able tofunction. I stand for 9 hours a day at work

  15. sharron jenna Says:

    Hello everybody on this page,i want to thank God for using dr. Kasee as my source of savior after 9 years of my marriage and my lover left me alone for 6 months,I have just been heart broken until i go in contact with dr. Kasee after i saw a ladies testimony on how she was helped by this same dr. Kasee,So i decided to get in contact with him and when i told him all my problems he laughed and said this is not a problem that everything will be ok in 2 days time.Exactly the 2nd day my husband called me i was shocked and what surprise me the most was that his behaviour was normal as the man i got married to.Am so grateful to dr Kasee for what he did for me in helping me to get my husband back, if you wish to contacting him Email: [email protected]

  16. Bryanna Says:

    Thank you for making more people aware and for helping me better understand. I’m 14, and I was diagnosed with EDS among other things about two years ago. I had to quit track and cross country because my hips were in so much pain. They also love to pop out of place. ugh. Even standing in art class watching a demonstration or standing in chorus I’m in pain. Do you have any tips on how to deal with it?

  17. Sarah Says:

    For hip and knees that dislocate or sublux frequently, standing is tough. Mine do that too, sadly. My strategies are A) not to stand too long; B) to shift my balance from one side to the other, then straight, then back to the sides; C) to walk a little even if it’s only a step or two; D) to constantly do strength building exercises for my joints that dislocate, largely using Therabands for isometric resistance. Best of luck!

  18. Sophie Arvanites Says:

    Hi Sarah,
    I know this is at tad late but I have EDS, too. I was diagnosed two years ago when I was 12. Early, I know. I have the hypermobile type and the kyphoscoliosis type. So I know exactly what you feel. I’m a dancer and it breaks my heart that on some days I can’t dance. Besides all the physical therapy and all the doctor appointments and all the dislocated joints and torn ligaments I’m still dancing. It hurt terribly for a while but I recommend stretching everyday. I found that in the long run, it helped me feel better.

    We can get though this.

    Best wishes,
    Sophie

  19. Sarah Says:

    Sophie – Yes, getting diagnosed at 12 is earlier than most EDS people, but hey — that can only work in your favor! You know what your body can and can’t do earlier, which is great. Best of luck to you 🙂

  20. I’m an idiot | Bethie Chapman Says:

    […] Hello. My name is Sarah, and I have Ehlers-Danlos Syndrome. […]

  21. anita miller Says:

    I have a daughter 18 , she keeps getting worse with all the symptoms you mention. The drs tell us its in her head, they say nothing is wrong. When she was younger the Drs tried to accuse me of munchauseg syndrome, then try to say my daughter was a hyper chondriac! They blood test now and then but its like a viscious circle because the test are normal nothing gets done. But my daughter has been diagnosed with hypermobility given some pt and done. Please tell me how to get the drs to listen to us so that I can at least get her to a specialist with out them thinking we are both nuts.

  22. Sarah Says:

    I wish there was some quick and easy way to get doctors to listen. The key is to find a doctor who you trust. If you can see a specialist like a rheumatologist or a geneticist, he or she can more definitively give a diagnosis–whether it is EDS or not. Good luck!

  23. Amy Says:

    OHMYHECK … I could have written this word for word. Although I was born with congenital hip dysplasia, I can track and tell you every doctor missed the EDS diagnosis. I am now 39! I am going tomorrow (April 22) to Medical Genetics at Mayo Clinic and will be diagnosed right away. Thank you so much for writing this. I’ve fought so much to find the “fix” to make my pain go away, I’ve begged for surgeries, granted this makes me sad … We’ll fight!
    Stay Strong!
    Amy

  24. Morgan Says:

    Hi. Ive been diagnosed with EDS since I was a baby and I’ve been having problems with my bladder and my parents are trying to find out if EDS is causing the problem so if anyone is having problems please write me back I’ve been going to a urologist for over a year and they’ve kind of given up. Thank you

  25. Sarah Says:

    Hi Morgan. Bladder problems are associated with EDS. Because EDS affects all collagen, any tissue or organs can be adversely affected by the EDS. Many EDS sufferers have intestinal distensions or punctures, and I have certainly heard about bladder laxity and punctures as well. Then again, it could be something totally unrelated to EDS. In any case, you need to treat the symptoms at the very least. I wish you luck with your doctors!

  26. Dawn Koch Says:

    Hello,

    My diagnosis of EDS, the hypermobility type and a host of other major health issues was put together as a puzzle over a period of 5 years. I can totally relate to “it is all in your head. you are imagining things” to the denial of family history by family members (that could have provided clues for earlier diagnosis) and just general lack of understanding, caring or even listening by all the people around me. I lost my job, hopes, dreams, the ability to paint murals, general functionality and most of my so called friends through this process. I had to remove all the toxic people from my life, and I feel more comfort just being alone, so I do not have the spend the energy I do not have on constantly reminding people why I am not able to do the things I did before. Even simple things like taking the milk jug out of the refrigerator can dislocate my wrist and fingers. I also have issues with my shoulder, neck, elbow, hips, SI joint knee, foot and all of my fingers. I never have a pain free day. I have a list of diagnosis two pages long that I assume all stem from EDS or they are somehow related. My main issues are not being able to sit, stand or walk for more than 15-20 minutes, therefore being confined to bed most of the day. Did anyone have these symptoms? This whole society is designed around sitting and standing – without that ability, I might as well be in a coma, since I can’t participate in any normal activity like others.
    I had to learn to pace myself and do things in short spurts just to get through the day. EDS is definitely a life changing event. I had to fight the disability challenge for a period of three year and I finally got it. It is a shame that paying for long-term disability through an insurance company for 25 years does not mean much when it is their turn to pay for disability. They forced me to get SSD, so they can get out of paying for it. I hate nothing more than being an unwilling burden on the government. I had to crawl on my hands and knees for two years sorting, organizing and faxing medical information to fight one denial after another. putting my stress and pain level over the roof. I also contacted our senator requesting that they force the insurance companies to be liable vs. forcing people on government funded SSD to reduce our huge deficit, but like all EDS issues, that also fell on deaf ears.
    My biggest fear is passing it on to my children and I already see early warning signs in both of them. All I can do at this point is apologize to them in advance for passing on this awful disease. I want them to be informed about EDS, unlike my immediate family, that is still in denial and still telling me to suck it up, march on and I was not raised to be a wimp, because I bring shame on the family with this condition. It is sad that I have to turn to total stranger for emotional support. Thank you for being there for all EDS sufferers and providing an outlet to express ourselves. My email is: [email protected] if anyone wants to chat directly. I could use a cyberfriend.

  27. Starr Quirt Says:

    I also have EDS. I loved being a “freekshow” as a kid. suddenly at age 40 I’ve gone overnight from mobile to having such severe pain I can’t compare. I do all dental stuff drug free so the suspect gall stone that wasn’t and huge spinal lump (decalcified bone in 3 middle vertebrae) lead me to wonder if EDS has another condition that you all may know of that can do this to an EDS sufferer. Sorry to be short and self-pointed but not my computer. I’ll be back tomorrow.. 612-545-5521 Starr in MN.

  28. Virginia Says:

    Hi Sarah,

    thank you sooo much for making this web. I have had a hard time finding one that had recent post, that I wasn’t sure if people posted anymore.
    I have classical EDS and POTS. You all are so great, it makes me want to cry tears of joy.
    When I was young, I used to be 1 ” from touching my head to my bottom. Acrobatic was so much fun. At some things, I was too flexable. I am now 56 years old. I ended up going to a NIH Dept of Aging Research for a Diagnosis of EDS. We all know about all the smptoms of EDS.

    How does anyone deal with the mental aspect of it. I talked to my Neurologist this afternoon and said that we need a PSYC. that deals with EDS. (and POTS). He said that’s a good point. I was on 12 different medications at the same time, 5 of them were psych drugs. I went cold turkey over 2 years ago.

    I went from 2-3 doctor visits a week to prob under 8 a year. I just can’t deal with being looked at wrong and being told , if you aren’t taking the drugs, you don’t have to see me. (Psyc Doc) I figured they are trying to push the pharmasudical meds that they are getting a kickback for.

    Peace to all,
    VA

  29. Jake Says:

    Hiya,

    Enjoyed the website, and I did read through the comments, but I have a question. I’m a 42 year old male with EDS III. My story is the same as most… took years and a visit to a geneticist before they figured out what was “wrong” with me. I have all the classic symptoms… hyper-mobility etc. But recently I’ve been having multiple pulmonary embolisms. (Blood clots). A few of them have traveled to my lungs, and I’ll tell you, I finally found what a 10 is on the pain scale. My Internist is a great Dr., he does quite a bit of research on EDS so as to best help me. He says there is some correlation between EDS and blood clots. I found a little bit online, but not much. Has anyone else with EDS had problems with PE’s? I now have an IVC filter in me, as well as taking Coumadin (blood thinner) for the rest of my life. Just curious if anyone else has had this issue?

    Thanks,
    Jake

  30. Jake Says:

    Also… sorry… Anyone here have aortic aneurysm issues in the thoracic or abdominal areas? I currently have a 5cm thoracic aneurysm and my abdominal aorta is dilated to 10cm. Dr. says the abdominal dilation is nothing to panic about yet, but the thoracic aneurysm is right on the edge. Anything bigger and I’ll have to have surgery. And it’s probably no surprise, the surgery scares the living everything out of me. I have enough problems healing when having typical joint repair surgeries, I can’t imagine how that kind of cut would heal.

    Anyone else with these issues?

    Thanks,
    Jake

  31. Virginia Says:

    Hi Jake,

    I know aneurysms and EDS go together. My father has thrown a blood clot into his lung and has a few other things wrong with his veins and/or arteries. He has alot of the outward signs of EDS but has not been tested. He is on warfarin, I beleive.

    Take care,

    Virginia

  32. Stacy Says:

    Hey! Thank you so much for sharing your experience. I’m trying hard right now to get a diagnosis of eds-Hypermobility. My subluxations are getting a lot worse. Do you have any suggestions of doctors, or physical therapists in San Francisco??

    Thank you again!

  33. Sarah Says:

    Stacy – Feel free to email me at [email protected] with exactly what you need, and I’ll ask my local resources and see what I can drum up for you!

  34. laura Says:

    Hi Sarah I to have EDS diagnosed when I was 29 with classic type witch is basicly types 1 and 2 although now after an enormous amount of research I believe it to be more so vascular type I have heart , bladder, spine, and bowel problems not to mention dislocations, brusing, tearing skin, teeth and jaw problems It seemst get worse everyday and I really struggled with the idea of having to live this way but with God I get thru it day by day I to have good days and bad days I cant do many of the things I used to love doing but it has sparked my creativity to find new ways to spend my time but thank you for sharing your story its been very inspirational

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