About EDS-NYC

The EDS-NYC group is a loose collection of people and family members with Ehlers Danlos Syndrome in the New York area.

Ehlers Danlos Syndrome is a genetic condition where the body produces defective collagen. For more info click these NIH, Wikipedia, and EDNF.

Based on the incidence of Ehlers Danslos Syndrome in the population, one would expect thousands of members in the NYC area. However EDS is dramatically under diagnosed, and incredibly misdiagnosed. The result is that there are many people walking the streets with EDS who do not know it.

Learning one has EDS is frequently met with relief as a medical history of many unanswered questions all fall into place.

If you would like to contact our group, please leave a comment. That’ll get to us. If you would rather us not post your comment for others, just tell us and we will keep it private.

29 Replies to “About EDS-NYC”

  1. Hi, I’m 17 years old and have EDS type 1 and 2. I live in Maywood, New Jersey, which is about 15 minutes from the GWB. I would love to attend these meetings, but the time is hard and the fact that its on a Monday. Is there anything that can be done to make it more convenient for school-goers? Thanks so much!

  2. How can I get a copy of your NYC doctor list? I live in the Hudson valley (near Poughkeepsie), so your meetings are a bit far for me to attend. But I need to find help for my 15 year old daughter. She has hypermobility type, and is in severe pain (hips, knees, and ankle joints) plus muscle spasms. She was seeing a rheumatologist at Columbia Presbyterian, who tried lots of drugs, including Lyric and Cymbalta, before she gave up on her. A second told her to live with it. The pediatric chronic pain center at Boston Children’s told her to practice better sleep hygiene (she gets about 2-3 hours of sleep a night, due to pain) and get good supportive shoes. We have tried PT, acupuncture, Tens, aquatherapy, massage. . Our pediatrician can’t think of what else to do, and wants here to see an adolescent psychologist. She is in tears or angry over the pain, but there has to be more that can be done to help her. Her older and younger sisters and I have ED too, but our pain is nothing compared to hers. Thanks for any help.

    1. Hi,

      These are the things that have helped: occipital nerve blocks for migraines, a progesterone tablet to stop the menstrual cycles, Cymbalta (is helping with emotions, moods, and the flu’y aching feeling), Midodrine (keeps her from fainting), Toprol (keeps the heart rhythm normal), Fish oil, NAC supplements, aqua therapy. Nothing has really worked for the pain but Darvocet and it is off of the market. Her pain is still uncontrolled and we are trying to find our 3rd pain specialist at this point.

      The things that didn’t help: tizanidine (it does put her to sleep), NSAIDs, TENS, flector patch, Lyrica (gained 30+ pounds), Gabapentin, ice packs, Flexeril, etc. PT did help the first round but not the 2nd or 3rd round.

      Just keep trying to find the right doctor as I know we are going to find someone if we don’t give up. Keep connected and research for her because it is hard to live with so much pain. It totally wears one down.

      ((hugz)) Ralinda

  3. I’m an English girl who moved to nyc for medical treatment a year and a half ago, it’s so far been unsuccessful. I’d love to have access to your list of eds friendly doctors and be able to attend your next meeting. If you’d like any help organising events/talks or get togethers I’d be happy to assist you. Many thanks and look forward to meeting you.

  4. Hi,
    My daughter was diagnosed by Dr Davis and she did a cardio workup on her but they didn’t give her anything to help with her current issue of fainting. We are just now undergoing treatment for that symptom and this is our 3rd cardiologist. I don’t know if it’s just the fact they can’t treat what they can’t diagnosis or there just have not been enough of us to be treated by them to understand what is going on. We have the paper work filled out for Dr Francomano and I’ve heard really good things about her. We liked Dr. Davis too and she took her time with us but outside of the cardio and optical checkups there was really no followup.

    My best advice is to get on the boards and research your symptoms and see what works for others and see if it helps her. My daughter (24) just go around to reading about the subluxing joints on one of the boards and said she’s subluxed all of her life and didn’t realize she’d pop it back in place! Such a weird body we are housed in.

    Hugz..Ralinda

  5. Hi, I post regularly on the EDNF message board, but didn’t know there was a NYC group. I live up in Albany, but have traveled to the City for medical consults as well as a hip replacement. I would love to get the list of EDS-knowledgeable docs in NYC.

    How can I do that? Maybe it’s here on your website, but I’m on my smartphone now 😉

  6. I live on Long Island and was recently diagnosed with EDS hypermobile type. I’d like the list of EDS doctors in the NYC area and I’m also interested in attending meetings.

    Thanks!

  7. I have a cousin Catherine A. who has ED and would like to contact your group for information.about your activities. She does not have access to a computer and has difficulty getting around. I would like to be able to put her in phone contact with your group. Please contact me Linda S. at this email address with any information that could help. Thank you in advance.

  8. Hi! I can’t make this week’s meeting, as I’m recovering from emergency surgery up here in Putnam County. I need to have more surgery in a couple of weeks (a bowel resection) and my surgeon was hoping to touch base with another doctor to discuss suture/closures etc. I’ve got the Classic type, or some variant of it. Can you send me the Doctor’s list of NY area physicians? Any GI’s or general surgeons on the list?
    – Kim

  9. I from long island, 43 and recently diagnosed by dr davis. She seems overwhelmed with patients and im still waiting for information from Dec. A list of area Drs would be great
    .

  10. Hi Everyone,
    I’m new to the site but glad to have found it. I have EDS IV-diagnosed officially in 2011.
    I would love to get the friendly Dr distribution list.
    Thanks!

    1. Hi my daughter is 26 has eds type four. Has had many dissections in arteries that lead to brain and a stent. She is stable but recovering stent on one side and a dissection on lf of her vetebral arteries. Rest body has been fine. What has your experience been and who is best doctor for type four? It is urgent.
      Thankyou
      Dcl

  11. Hi – I’m wondering if I could get a copy of your doctor list and any info you may have on upcoming meetings. I’m a Long Island based probable EDSer, and I’ve had a really hard time finding doctors that have any idea what EDS even is. Thanks in advance for any info!

  12. I just found this through the Inspire EDS message boards. I’m 53, live in Brooklyn, was diagnosed with EDS – Hypermobility Type in February of last year. My Brooklyn rheumatologist is a wonderful man. He diagnosed me and – while he has limited EDS knowledge, as most doctors do – he is VERY responsive to suggestions I bring him. His name is Dr. Piatti and he’s in Brooklyn Heights.

    I’m also now doing Pilates with a dancer friend teacher at Bent Pilates in Hell’s Kitchen. Her name is Teri Seier Moore and she has done a TON of research on EDS to put together a program for me and we are learning together. She is gentle and responsive to fears and even minor pains and I’m sure she’d like to help other sufferers, too.

    If anyone else has pain because of flexible flat feet like me, I recently found something that REALLY helps me – you can read my thread about it on Inspire here:
    http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/the-ceo-of-the-foot-sleeve-company-is-giving-us-a-30-day-discount-code/

    Good luck everyone – I hope I can come to some meetings and meet some of you now that I know you are out there!!
    – Cy

  13. People should know that while the health care providers that are mentioned on the Drs. in NYC Friendly to EDS List are somewhat acquainted with our disorder and expert in their respective disciplines, it is still up to us as patients to learn and understand specific issues pertinent to EDS so we can advocate for ourselves/keep health care providers aware of current EDS information. The EDNF website is a treasure trove of such information. In particular, the slides from each year’s EDNF conference spell out items of concern in care for EDS patients specific to many of our symptoms (eg, sleep, chronic fatigue, pain management, TMJ, foot troubles, carpal tunnel, etc). Also, in terms of getting the proper respect from health care providers it is important to get the official diagnosis of EDS which only a geneticist can make. Fortunately, we have two (maybe others I don’t know?) in Manhattan: Jessica David, MD and John Pappas, MD. It is very exciting to see how the word about EDS is spreading rapidly, healthcare providers are taking note and learning, and we are seeing a great increase in interest in connective tissue disorder.

    1. First off, I want to apologize for misspelling the name of one of the two Manhattan geneticists who can diagnose EDS: her name is Jessica Davis, MD, not David. I am not surprised that she is overwhelmed with patients as she is supposedly able to provide continuing treatment, after the diagnosis is finished. John Pappas, MD, at NYUMC is easier to schedule. Granted, he may seem a cursory evaluation and may not be the best for distinguishing the type of EDS but as a geneticist his diagnosis of EDS really does count. I myself was diagnosed by him (after a rheumatologist had called it a couple of years prior) and found that once I had the official diagnosis my providers gave this diagnosis credence.

  14. HI I am new to this group. My 10 year old has very bad flexible flatfeet which overpronate and cause pain in his subtalar joint. he has been recommended a subtalar artheroeirisis, the implant.. not the fusion. has anyone else had this done? can you all recommend a podiatarist or orthopedic, feet ankles, who are eds friendly? thanks

  15. Hello! For years I’ve had doctors argue over whether or not they think I have ED because I wasn’t 7feet tall or had extremely stretchy skin, but after moving to New York I was able to find a doctor with some familiarity with ED who was able to confirm my suscpicions– she wants me to go for genetic counseling because she thinks I have type III (I was referred to Dr. David but can’t get manage to get an appointment) but like most people here probably were, I’m just excited to know that I’m not crazy or without any constitution and that my issues are real and explainable.

    I’d love to one day get in touch with some people who are more experienced with how to properly care for onesself. My career involves leading a fairly active lifestyle and the one thing that really scares me is finding out much too late that I’ve been doing something that’s going to put me in a walker.

    1. IggyS, if you are male you may be in luck in that males with hypermobility type are generally less symptomatic than females with this type. Also, and I am female, I did a lot of machine-driven weight training in my 30s which built muscle and probably allowed me to function actively. This was decades before diagnosis in my 50s and long before I was advised to not do such exercise for risk of dislocation. I’ve been lucky to not have frank dislocations (my non-exercising mom had plenty by my age) although progressive osteoarthritis has taken its toll. I now do very different types of exercise. But here’s a tip that took me a long time to figure out: targeting connective tissue itself (when one has a collagen disorder, after all) is very useful in injury prevention. It so happens that right here in Manhattan the Jewish Community Center (JCC) on the UWS has a number of “MELT” classes, demonstrating how to do exercises targeted to replenishing the *connective tissue system*. Other than Rolfing, this is the only therapeutic approach targeted to the connective tissue. We are quite lucky to have this goldmine right here, thanks to the developer Sue Hittman living in NYC. If you don’t live right in Manhattan you can learn how to do MELT by buying the book (only 1, thank goodness) and the few tools (foam roller, collection of small balls) needed to do the exercise.

  16. I was recently diagnosed with EDS type 3 it only took 6 shoulder operations & lots of snap, crackle, pop over a 20 year span. Humor is key, no matter how twisted.:). Anyway, I live in NYC and would love to go to a meeting. I’m not sure where or who I should contact so I posted since it stated above they will be read. Thanks so much I appreciate any info.

  17. I’m after a little advice…I’m from NY, but currently live in the UK. My husband and 2 children all have Vascular EDS. In the UK we receive free healthcare, but we’re thinking of moving to the US (possibly NY, NJ, or CT) and are a bit bewildered by the affordable health care marketplace and what would be best for us. They currently receive regular yearly monitoring, my husband takes medication, and of course he makes frequent trips to the doctor/hospital for various reasons (as will the children, most likely, when they get a bit older). Are you able to tell me what other people in NY have found to be the best option? Or recommend a broker/navigator (little bit confused by these terms) who could be useful.

    Any advice to help inform our decision would be so greatly appreciated! I’m so confused. Please do not publish this to the forum.

    Thanks!

Leave a Reply