What is EDS

Oh dang. I think this just answered the medical mystery that was my childhood.

8:22 I'm sitting here crying now, and feel so very understood! I have all these diagnoses, and it's because of piecemeal treatment, and being written off as hysterical because I have a PTSD diagnosis too. I am still not formally diagnosed, but I believe in myself enough to advocate and refuse mistreatment. This medical center is officially the first thing to ever make me find Arizona enticing!

I live in Mesa. I just found out that I have 2 family members with hEDS and POTS. I have been dealing with symptoms of both of these since I can remember. I am obese due to many reasons, but one huge factor is fear of being in pain or hurting myself. This fear caused me to not do anything because everything hurt, and it hurt worse when I moved. The best part of gym class for me was the stretching because I could stretch farther than my peers, even being overweight. My whole life, I would complain to my doctor's about my pain, they just told me to lose weight and everything will be fine. I was put on extremely restrictive diets and never lost any weight. My nana had to have spine surgery due to this.

Dr. Saperstein is my doctor. He's really excellent. Although EDS is difficult to treat, the staff at the Center for Complex Neurology follow the science and do their best to help you manage symptoms in a patient-centric, respectful environment. Two thumbs up and a whingy dingy. My highest rating. 🙂

Thank you..I was recently diagnosed with hEDS, after years of strange and different symptoms, I was looked at by many Doctors as the elephant...my two teenage children do have symptoms, different ones, and I am convinced that they have it as well, but they have not been diagnosed. It's still something quite "new" in Austria....many times each of us has been told it's something psychological....

Thanks for the contribution. I also suffer from the EDS syndrome, along with other diseases (chronic idiopathic pancreatitis, pancreatic duct anomaly, pancreatic insufficiency, pancreatic cyst, gastroparesis, extreme mesenteric artery compression syndrome, heart valve insufficiency, coronary buttock spasms). I have been tube fed for 14 years and oral feeding is no longer possible. A proportion of patients who suffer from EDS also have a comorbidity with a compression syndrome in the intestine (there are various e.g. the mesenteric artery compression syndrome, Dunbar syndrome, nutcracker, May-Turner, etc.). This is shown, among other things, by pain after oral intake of food, some cardiovascular problems, etc. Unfortunately, the knowledge of this correlation/comorbidity is not widespread. There is a scientific paper on it. Unfortunately, since knowledge of this comorbidity is not widespread, I wanted to post the comment/note here, maybe this information will help someone

Thank you for this presentation! I am getting chills on my joints and my heart is raising more than usual just watching this. I feel so identified but yet there's still a lot of research that needs to be made for the actual treatment of EDS. Every doctor I've seen knows what it is but doesn't know what to do about my symptoms and this is never something any patient wants to hear. I am left to accept my situation and told to be glad I don't have an immediate life threatening issues. However my quality of life is important and we need to keep looking for answers for all of these zebras left to wait out this ride. I feel trapped in my own body at times because I know I am capable of being normal but my body won't let me. Thank you for the information and for spreading awareness. Every step counts.

After 20 years of begging for answers I finally found a rheumatologist to suspect eds type 4 and getting genetic testing done. 🙌

I have a very strong suspicion that I have some variety of eds. I really should get it checked out. I have extremely pale skin with very prominent veins that are visible on my face, legs, arms, chest, back (pretty much everywhere) I am hypermobile and both bruise and scar very easily. I'll also have heart palpitations and feel faint/light headed frequently. Then I'll convince myself that I'm just being paranoid and never get it looked at.

I was diagnosed with eds a year ago age 30, it’s now caused me to not be able to carry children thankfully I have two healthy children. Carrying them caused my pelvis and hip to need plates and screws. I also now have arthritis in my spine

I have hEDS, we have many in my family with gastrointestine issues, arthritis and asd/adhd. I also have ME/CFS and endomitriosis. My issue is that all the doctors I've been to have dissmissed my symptoms time and time again. I've been in constant pain for as long as I can remember. I have a diagnosis of hEDS from a physiotherapist that does research into EDS and is an expert on the condition. But in my country only licensed medical doctors are allowed to make formal diagnosis. And mine doesn't belive in anything but the common cold. I had to fight my previous doctor to get a referral for my ME, becuase that's not a real illness either. It's a good thing there are organisations like yours that spread the word in easy to follow and interesting ways. I'm sharing this with everyone I know.

“vEDS is characterized by translucent skin and prominent veins-” looks down at VERY prominent veins in wrist, “-some hEDS patients may have some prominence of their veins and become alarmed but-” sigh of relief

Excellent presentation, perhaps the best one I've seen. The only thing I would amend is the image used for vascular eds is the same person not two different people. In rare cases those with veds can suffer from adipose atrophy whereby the structure of their face is lost.

Anyone else have pretty much 0 memory??? As in if it isn't a story or in a picture you don't really know????

Omg I have never had anything explain the pain in my jaw that happens only when I eat some things. I felt it just yesterday when I went to eat a toaster waffle lol. It also happens when I eat with my headphones on. That and a lot of other things lining up explains so much. My grandma got diagnosed with arthritis at 9 and last we talked she said she wouldn't be surprised if I had arthritis setting in too, even though I'm only 20. But my pain doesn't quite fit arthritis when I consider my whole body and not just my bad knees and hips. The headaches, jaw pain, easy bruising, transparent skin even for a super pale person, joint pain, gastrointestinal pain, and dietary restrictions/allergies that I've had my whole life all kind of line up with EDS, I now realize.

I have all the symptoms mention here… I just to learn to live with all this

I just got diagnosed with hEDS a few weeks ago. One point which is never mentioned is I sometimes have a "low" body temperature of 35,4°C for example. In this time I always feel hot like burning inside and very weak but without sweating (I usually sweat a lot!). Can this be linked to hEDS as well?

My son was diagnosed at 6 by having anouther disorder. I didn’t know I had it until he was diagnosed

I just got diagnosed with hyper mobility syndrome, but I feel like it might be a misdiagnosis so I’m getting a second opinion…

I have pots and how do I get tested