Ehlers-Danlos Society

Join the Conversation on
Ehlers-Danlos Society
2.9K people
0 stories
62 posts
  • About Ehlers-Danlos Society
  • Explore Our Newsletters
  • What's New in Ehlers-Danlos Society
    See full photo

    What’s been your experience with patient advocates?

    Navigating the health care system when you have a condition like EDS can be challenging and overwhelming sometimes, especially when met with others who aren’t as knowledgeable about what it’s like to live with your diagnosis.

    But sometimes, seeking assistance from patient advocates who are educated and willing to put in work to get you the help and treatment you need is invaluable.

    What have your experiences been like with patient advocates? Did you find one that was helpful to you?

    ✅ Want some insight from a personal experience? Check out what ChristieCox has to say in recent Mighty article here:

    #EhlersDanlosSyndrome #RareDisease #Hypermobility #EhlersDanlosSociety #ChronicIllnessEDS
    #HypermobileTypeEDS #ChronicIllness #ChronicPain #Spoonie #Fibromyalgia
    #MentalHealth #Anxiety #Depression

    2 reactions 2 comments

    Finding a Dr.

    #EhlersDanlosSociety #EhlersDanlosSyndrome

    Does anyone know of a resource to help you find a Dr. in your area that is versed in EDS or know of one in the Dallas/Fort Worth area?

    I've had non-severe yet still very present symptoms indicative of EDS my whole life, hypermobility, joint instability & popping, chronic pain, bowel issues, stomach pain & acid reflux, white coat hypertension, etc. All recurrent problems for me, but not urgent enough to motivate a Dr. to be terribly concerned or help with a diagnosis.

    I know a diagnosis doesn't change much in terms of playing whack-a-mole with managing symptoms, but I am recently married, and in the next couple years will explore the possibility of trying for children, I would like to have EDS on my medical chart as I know it can be a risk factor for pregnancy/childbirth and would like to make sure this is considered with how I navigate that journey. I would also like to raise awareness among medical professionals for future people struggling with this. Hopefully they don't have to go as long feeling crazy like I did before getting some answers.

    3 reactions 5 comments

    Looking to do some research

    Quick question. Do any of you have sites that you have gone to that give information about EDS? I was recently diagnosed and I want to research on it so I have a better understanding of what it is that I am now dealing with. #EhlersDanlosSyndrome #EhlersDanlosSociety #Ehlers -danlos #hypermobileehlers-DanlosSyndrome(hEDS)

    13 reactions 4 comments

    Temporary Alternative to Silver Splints?

    Hey lovely people! Quick question about finger ring splints. I have several splints from the Silver Splint Company and I’m looking to order some more. However, I would like to try out the type of splint to make sure it actually addresses the pain before I invest in a silver splint. So I was wondering whether anyone knows of a company that makes similar splints to the Silver Splint Company/custom splints but in plastic or another (less expensive) material? Due to my location, an Australian-based company would be ideal, but if not, any company that currently ships internationally! Thank you so much! Apologies if this post is a little rambling - my brain fog is on point today haha.
    Sending you all light and love!

    #EhlersDanlosSyndrome #EhlersDanlosSociety #JointHypermobilitySpectrumDisorder #hypermobilityspectrumdisorder #HypermobileTypeEDS #ChronicIllness


    advice on healthily loosing weight with an ED, HEDS, PCOS, Depression etc. ??

    I am currently quite overweight and I want to get into better shape and loose weight for myself and was told to by my doctors. but that seems almost impossible with all of my illnesses. First of all I have an Eating disorder (not specified, more binge eating) which makes food and body image very complicated and then I have PCOS, hashimoto’s and hypothyroidism which is already hard to loose weight with on top of hypermobile EDS which makes getting active and moving physically very hard and painful and to top it off low energy and motivation with depression. I’m trying to do this to just slightly feel better but I don’t exactly how. How do you stay in shape with these kinds of setbacks? i’m open to any advice! Thank you <3 #BingeEatingDisorder #PolycysticOvarySyndrome #HypothyroidismUnderactiveThyroidDisease #HashimotosThyroiditis #HEDS #hypermobileehlers-DanlosSyndrome(hEDS) #EhlersDanlosSociety #EhlersDanlosSyndrome #Depression

    5 reactions 37 comments

    Missing time from work due to HEDS and pain #EhlersDanlosSociety #EhlersDanlosSyndrome #ChronicPain

    I recently received and awarded medical accommodations not only due to my Ehlers-Danlos Hypermobile disability but also Epstein-Barr Syndrome; chronic which has completely compromised my immune system and have had not only Covid twice but most recently walking pneumonia and in the past bronchitis, strep, the flu, the list goes on. I have since receiving the medical accommodations which include leave, missed work including today a total of two times that will no longer count against me as they are protected federally. However what I didn't say in the title is living with my husband. We have not had an official ceremony yet, hopefully planning for it in April next year. I have also decided what I want to do for our honeymoon, universal studios in particular hogwarts and get myself and my husband (I'm officially a Gryffindor and he's a Ravenclaw) our official robes and and get us our own wands. We are also practicing, side note, Wiccans and witches hopefully no one will be offended by that. What we do is mostly praying or lighting candles or incense for our closest friends and family to be safe and have speedy recoveries. Also cleansing and keeping on us a variety of crystals ranging from labradorite to sandstone, which we cleanse via full moon lunar cycles. Sorry, got sidetracked. My husband while supportive and has been my superhero and savior on more than one occasion, even before we were dating, is very temperamental when it comes to my disabilities, pain and especially missing work, especially now that he works in the same location different department as myself. My management team has been behind me since a very wretched and ongoing familial problem started in October which has only added to my PTSD, and they are now even more supportive making sure that I am okay. The general Manger is even rewarming up to me and is an awesome and great guy. But my husband, especially since he waits till the last minute to get out of the bed to get ready and go to work while I'm already halfway dressed and checking emails, is angry and yells at me when an event like this happens. I have officially had to solemnly swear to not miss anymore work unless work sends me home due to illness. I can't use the prescription muscle relaxer because when I crash with it I move around and am in more pain. So I have had to resort to something that hopefully this post won't get taken down for, a THC pen. That and a tramadol are now all that works in getting my pain and muscle spasms under control. Yes I will fully admit that I wad stupid yesterday and was the one to change the oil on our car instead of my husband, with very low ramps holding the car up. So that is the reason I missed today from work and I dislocated my hips yesterday but said to my husband when he relocated them this morning that they had done it in my sleep. Again, my husband has been super supportive and but it is demeaning and hard when he yells at me for missing work. Sorry for the long post. #EhlersDanlosSociety

    1 comment

    Let’s get real about EDS #EhlersDanlosSociety

    So let’s get real about our disease. Ehlers Danlos is not just something I have. It’s as much apart of my body as my green eyes and red hair. Formed,born, is living with and will die with it. No cure, no even dream one. So what does this mean for us? My brother and I both were diagnosed at the same time. My family likes to refer to EDS in two groups of patients. Functioning and nonfunctional EDS. My brother despite having the gene scored very low on the beighton score and truly has very little issues. I on the other had have every point and my life has been very affected. I was diagnosed at 19 at hopkins by Dr Levy who I only met once and even though I only met him when he diagnosed me, having him being the person to diagnose it set in motion my ability to get treatment by people who truly are passionate about this disease and know how to deal with us. Because I’m sure I am not the only person to have doctors see my diagnosis and the severity of them and would not treat me . Less then a month after being diagnosed I met Dr Henderson and he has now done two c fusions me as well as treated my seizures . He was a breath of fresh air. He truly has dedicated his life to helping us. Because of him I was able to get in with Dr Francamono. She is extraordinary. If you are able to be seen by her please do it. She is worth the wait,drive , or whatever. She however taught me how to get real about my diagnosis. At 23 she sat my parents and I down and informed us this would be the best I will ever be. No one had really managed my expectations before her saying that. Some people might not have responded well to that but she made truly understand this is degenerative. And she was right. I have been very lucky to have seen these doctors and every one of them is familiar with each other and they are super heroes. The right doctor makes the difference in living with eds and also I truly believe it’s healthy to be honest with ourselves. This isn’t a pity party , it’s a way to keep from having your world shattered. When I had my left SI joint fused I went back to Dr Henderson and his partner Dr Rosenbaum did the surgery. My first appointment Dr Henderson came to the consultation and was simply there for support. I was also informed that it could be six months or six years from now but my right side will fail and I will need to have the surgery on the other side. I’m not anxious about it. As soon as I feel that pain I know I have an option which was successfully done in my left side already. So what am I getting at with this post is two fold… if you have the unfortunate luck to have EDS manage your expectations… be real with yourself for your own sanity and to do whatever you need to get to the doctors that speak EDS

    1 reaction 2 comments
    See full photo

    A letter to Ehlers Danlos syndrome,the disease that has shaped my life #EhlersDanlosSociety

    Dear EDS,
    Thank you for the years of dislocations and the years of surgery that has followed. Thank you for the skin tears and bruises that caused my parents to be questioned for abuse when I was little. Thank you for giving me a neck that was shaped like a backwards S before having to be fused in four places. Thank you for a stomach that will make me throw up, as well as have both constipation and diarrhea. Thank you for making my heart rate shoot up when I stand and blood pressure plummet. Thank you for making my Mast cells completely freaky about just about everything. Thank you for the hives, swelling and of course the tongue swelling. Thank you for making it impossible to get proper treatment for 19 years of my life and even after you were diagnosed I went from being crazy to “to complex.” Thank you for the tubes,ports and so much surgical titanium you have required over my short life and will continue to need for the rest of my life. I thank you because you have made me bendy and stretchy and made of literal steal. You have made me open To all the little difference that reside inside as all. Tougher then most people will ever have to be. For understanding life and death in a way most people have only had to understand just moments before they pass. Thank you for building me into a woman who can face anything that is thrown at me because I have battled for every second of my life. You have made me a warrior with an army of warriors at my side . All sharing one crazy generation mutation. We are strong because of being born different. And thank you for that, also for just one small gift.. that we will all look young fighting!
    Sincerely A Zebra Warrior

    1 reaction 4 comments

    Newly diagnosed


    Hey everyone! i was recently diagnosed with venous thoracic outlet syndrome after struggling with a horrible DVT that has not gone away as well as constant nerve pain, numbess in my face, arm, and hand, and swelling. It has been so scary for me. I will most likely have to get surgery because it is so bad. I also have ehlers danlos syndrome and all of the comorbidities that come with it. I was wondering, for anyone who has both, is it possible that this puts you at risk for more vascular compression disorders? I have so many unexplained health issues and I have been researching other vascular compression disorders and I am really wondering if this is something I should bring up to my vascular doctor (things like MALS and SMAS). What are your thoughts? Do you have more than one? #EhlersDanlosSyndrome #EhlersDanlosSociety #MedianArcuateLigamentSyndrome #smas #MALS #vasculardisorders