The Ehlers-Danlos Society
The Ehlers-Danlos Society
The Ehlers-Danlos Society is the global nonprofit organization dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.
Our goals are world-wide awareness-and a better quality of life for all who suffer from these conditions. Research is at the center of what we do.
Many around the world face a diagnostic odyssey: years, sometimes lifetimes, fighting for recognition, diagnosis, and care. We are working towards a time when geography and wealth no longer determine your quality of life. Education is needed to advance early diagnosis and intervention-and post-diagnosis, patients urgently need support and guidance. We want to give hope to all those living with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Visit ehlers-danlos.com
Any medical information found here should be discussed with your doctors thoroughly before taking action.
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I have EDS, Dysautonomia, and a laundry list of comorbidities. I would get so much benefit from service dog (physically, mentally, and emotionally), but there are many things that are currently preventing me from being able to get one: My husband has a pretty severe allergy to cats and dogs. And because I love him and since he is my main caregiver, I do not want to risk his health. I also am concerned about being able to give my service dog enough exercise; my mobility and stamina issues may make it difficult to provide the dog with enough physical activity. And lastly, the cost. Service dogs are extremely expensive and with me not being able to work, our budget is already very tight. It really sucks... I feel lost and I don't know what to do.
As an hEDS patient I was unintentionally overdosed on general anaesthesia drugs which almost killed me during an operation for endometriosis
Lots of good information.
(M 26) Hi, recently I have been looking into some EDS symptoms because I think I tick a fair amount of boxes (see-through skin with visible veins, no earlobes, large and bony fingers with veins, skin hyperflexibility, easy bruising) and I'm worried I could have some form of EDS. The only thing is that I have had a leg operation on the hip and one on the knee (both related to each other but with years apart one from the other), and had no complications during the operation or the post-op. Could you have EDS (I am a bit hypochondriac, so let's add vEDS), and not having complications after a big surgery on the hip and a small one on the knee? I keep going to the doctora with the facts, but they always refuse to further examination because "you can't have EDS because it's so uncommon". Recomendations ? Thank you
Please reach out to our helpline for support -www.ehlers-danlos.com/eds-helpline/
Check Beighton Score. Google if you don't know how to check.
I have just received confirmation of my HEDS by a geneticist. Waiting on information on physical therapy and interview on vascular EDS. My veins are bursting when needles are used on me. I’m 61 and I’ve had plenty of time in Drs offices for joint problems and I found the EDS on line and studied and figured out what I have. It was a terrible struggle to get an evaluation. I’m still waiting on real help and feel like the medical field feels like it’s too late to help me really. Now I’ll push for my children.
I'm so sorry to hear how you've struggled; your children are lucky to have you in their corner. Our helpline is always there for you ehlers-danlos.com/eds-helpline/ for information and resources.
@@TheEhlersDanlosSociety hello! I’m waiting on my phone interview for vaslaurs EDS and was told by the geneticist that it’s a complicated issue and thought I may not pass the verbal ( over the phone ) interview. I’m curious but holding back on looking up info so interview will be clean on my part. I have read up on it some and that’s why I was asking for an evaluation. I don’t have all of the scariest symptoms at least and learned that having HEDS could be the answer to why my veins burst on me so easily. I’ve never been diagnosed with a brain bleed or anything like that.
Thank you for working towards my children having a successful, happy future and closing this gap in healthcare!
It's already hard to get a clinic diagnosis for hEDS (in Germany), but it seems almost impossible to get therapeutic help or find specialists here to help manage the symptoms. Doctors seem to collect money as long as some testing can be done, but as there's no surgical solution or any money involved in the therapy of EDS, in my experience you are just on your own... I hope that current research and higher visibility of this complex topic will improve the situation... Love to all of you zebras and horses out there!
I have 1, 2, 4 & 6 year old children. Every day is a struggle. My husband has to pick up so much slack. Plus I have osteoarthritis in my pelvis, on top of these debilitating issues. My husband & children are still absolutely thriving, but I keep getting worse by the day.
Thank you for sharing your journey. I a male, 40 years old that been competitive in sports until recently just got diagnosed with vEDS after having multiple mini-strokes the last months. I had ambulance personal, nurses and even doctors rolling their eyes over me and I don't even know if will call ambulance next time. At least the diagnose have given me some confidence back. I am far from being hypochondriac, but my mental issues and my anti-depression cure have not really helped convincing emergency rooms that.. I wish you all the best!
Best App for Autism treatment
Is Dr Russek still practicing ?
HI, I just watched this video. Thank you for the information. Which heart rate monitors/sleep monitors do you recommend?
Very comprehensive, thank you for this video. All the best.
How is this improving awareness and education when the video explains absolutely nothing about what it is..
Sending so much love to all my fellow Zebras.
hEDS here, along with my daughter! As each year goes by, various folk in medical fields seem more aware of EDS.🦓🦓🦓 p.s. I'd LOVE to have some of the EDS themed shirts/hoodies(2:36) shown in this video!
I’m 51 and I’m pretty sure I have this. I wish the wait lists to get tested weren’t so long. No one really believes me feeling sick all the time. I want people to believe me!
I believe you ❤
I belive you ❤
You two cheered me up. Thanks. 💙💙💙
Finally diagnosed with hEDS last week, 30yrs after onset of symptoms. I’ll be 50 next month. No help from Doctors whatsoever. Had to pay privately for a diagnosis in the end. The awareness just isn’t there sadly
Lara Bloom is the definition of a true leader. Thank you! 🙏
Diagnosed at 50. My kids all have it as well. Thank you so much.
Thanks for sharing this with me! Thank you for EVERYTHING you do for us all who are affected by EDS. We are definitely MORE Than just a patient, we are also the ones who are providing the doctors a paycheck. Without us, they’re not making any money 💴 and therefore they are not going to get a paycheck!
"Nobody should wait 30 years for a diagnosis " Amen. Shame on our medical society. Shame on you for calling us pain-seekers. Shame on you for blaming fibromyalgia. Shame on you for making genetic testing $$$$
Thank you for sharing this with all of us, I have cEDS and my niece has hEDS. We both got it from our parents, our mom’s have Osteogenesis but our fathers must have been the one that carried the genetic mutation for EDS.
I waited 43 yrs for a diagnosis
I got my Dx at 49. And I have cEDS.
Thank you so much for sharing this and spreading awareness about EDS. 💕💕
Thank you for sharing your story. Glad all of your surgeries were successful and you are here to raise awareness to vEDS. How has this impacted your siblings? Have they been screened for possible aneurysms and tested for vEDS?
Ein tolles Video! Danke! 🙏✨
I’m so upset realizing all of my doctors have failed me. Just found out what EDS was about 2 months ago due to worsening SPD that my ob doesn’t believe because I’m 1 1/2 years post partum & 28 years old. Pain has gotten to the point of only getting out of bed for basic needs and for my kids. 4 pregnancies, all premature babies (36, 35, 34 & 31 weeks). Preeclampsia, incompetent cervix, pancreatitis, cholestasis, polyhydramnios to the point of needing an emergency cesarean, vomiting 24/7 (still an everyday issue, maybe some to do with breastfeeding?), needing to wear a heart monitor for a month which completely blistered up my skin. BUT everyone likes to say how lucky I was with my pregnancies because I’m back down to 110lbs with no stretch marks. Thank you for this video, it’s too late for me, but I have 3 daughters who this could be very beneficial for in the future.
Excellent descriptions with breaking everything down! Extremely helpful.
Wow, what you described sounds so much like me through out my life. I’m 48, I was diagnosed with Dyspraxia at 41 while studying and ADHD at 45. I’ve had problems with pain in my legs since early teen years where the centre of the muscle nots up and they feel like they are on fire. Thank you for this.
This woman is amazing
Its great someone knows the relationship, but fixing this is the challenge.
I am white elderly and not believed l finally got my primary care doctor to admit my diagnosis seemed like ehlers danlos syndrome and referred me to a rheumatologist to get a diagnosis, l am 75almost 76 in June , l have had pain from this since a child , l remember so many times of pain and my mom saying “ aww honey it’s just growing pains so l would go back to my room at night lay on my bed with my legs stretched against the cold wall to get relief from the pain , my mom being a war bride from the Netherlands 🇳🇱 wanted so bad to see her family after years of being in America, so daddy made a way to do that for his wife and while we were in Amsterdam “ l was going to school at that time and they tested all children every six months for scoliosis, and found l had a mild case of it by watching from behind me walk to the end of the room , so….. my mother being a Dutch citizen born and raised in Amsterdam, we were able my brothers and I to get free medical care ( this was back in the late fifties and early sixties mind you , l went to one of their hospitals and they made a ( gyps bed ) for me to lie in every day for a total of six months 😮😮 oh it wasn’t very comfortable at all 😮😮but that is the story of my journey with scoliosis, l really never learned to lay in it that much lol 😢even with my poor momma getting up in the middle of the night to make sure l didn’t put it under the bed again, but returning to America after a couple of years , l found myself feeling more pain through the years along with me being the only sibling getting car sickness with lots of other issues l also was very double jointed with popping out hip joints my husband couldn’t believe l could pop my hip out and it would go back plus other issues l can not name for my fingers and hands are in so much pain right now, l just want to tell you sweetie that people here in the states will discriminate against anyone who tries to mess up their professional advice educational even if you are truthful , they could careless! I am flat out disgusted with some of these doctors they have neglected me to the point l am mad as hell and….. they have taken away years and years of my life ( Quality of life ) l walk forward everyday with first a Prayer to God to give me the strength to make it ! my own family has made it a complex process. Thank you darling for what you do Gods Blessings to you 🙏🇺🇸🙏🌸🌸❤️
My pain is so bad I don’t know how much longer I can take it. I have Eds and all the other crap, recent dx of gastroparesis after 30 years of agony. I get no specialist help for any of my conditions, I live isolated and scared because the way I have been treated. I’ve come off all my meds because they make it worse. It’s so cruel to suffer this
I’m thinking that perhaps vascular Ehlers Danlos can have a longer fetal /umbilical cord. All I know is my second Son had it doubled round his neck not sure if that’s a vEDS occurrence sometimes
It ought to be a felony in the USA for any doctor or practitioner, etcetera, to prescribe a drug that causes autonomic dysfunction!
Does anyone else with dysautonomia feel that their head is detached from their body? Does anyone else with dysautonomia deal with histamine sensitivity?
Does anyone else with dysautonomia not feel the temperature or touch of their hand or hands on their body or face? Also, does anyone else with dysautonomia have lack of sensation in their head AND/OR lack the power to or doesn’t yawn when tired? Lastly, does anyone with dysautonomia find it difficult to keep to a schedule and details?
My story is similar left scholl with no qualifications .I really struggled with pain migraine and severe mental health issues .I was finally diagnosed at 52 .I managed to get two degrees .It so sad we have struggle through our lives.
Can anyone share with me some Doctors that are knowledgeable about EDS , Veds etc . In Florida and Georgia ? I have low sight and would be so grateful to all and any who may can help me . ♥️
Wow that question about medication not working pissed me off. That doctor has no idea what shes talking about. Its common knowledge that hEDS patients have a dysregulated digestive system and that its very difficult to get the wanted effect from various medications because the body doesnt absorb it like a normal person without hEDS would. For instance when I got thyroid issues, I got sooo sick from the medication because despite me being on a fixed dose, my body would either not absorb it, absorb a little or absorb everything, so I would be on a rollercoaster of increase/decreased levels that obviously set of a rush of different symptoms of over/under medication. I got soooo sick, blew up like a ballon and got extremely emotionally unstable and had to taper off all the thyroid meds. Ive talked to several Eds'ers with the exact same issue. When dysautonomia and a dysfunctional spinxter in the digestive tract + lack stomach lining together makes the digestive system unable to absorb medication or neutrients from the food you eat, you become dysregulated and medication can be quite dangerous. I had a poisonous reaction to opiates for this reason . Its the same reason why anastethics dont work for many EDS patients during surgery.
Wow 🎉
I used body scanning and the yogic breathing method to help me with ptsd and it worked. I use it now as a dancer. I am fine when I dance to music - I ve known this for years - the doctor asked me if I want to get an assessment - but I need space in my life with peace - too many untrained people, interfering which makes me worse
My GP is constantly pushing me over to psychiatry and don’t need to go there. I need less to do and support for not overwhelming me. Others cause my problems by being pushy and not believing me
How couls you help me I've got ADHD and I'm 37 I lived in arabic country where there's nothing could ADHD for adult so there is no treatment 😢
💙💙💙
❤ and strength to You Thanks for sharing
We need more doctors like you! This is me to a T.. it’s truly unbelievable how spot on this information is and how many Dr. have no clue.
I get little tears from friction on my bed sheets and couches/chairs and I didn’t realise that was ‘fragile’. I have given myself big stretch marks from putting a bag on my shoulder and dragging the fabric of my sleeve between the strap and my skin. I just got so used to being careful to avoid injury
It is nice to hear the voice of a college classmate who was a friend due to living on our tight-knit dorm floor of about 53 really great kids. It seems like yesterday, but wasn't. He was a great guy, someone you'd be happy to see ask your sister out, and smarter than the average bear, even for MIT. (John H, 31 suite if he sees this)