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What is Ehlers-Danlos Syndrome?

Stretchy skin, hyper-mobility, and chronic pain — this is what it's like to live with Ehlers-Danlos syndrome.

Bringing awareness to how different every patients symptoms can be

Stretchy skin, hyper-mobility, dislocations. Those symptoms can be a sign of the Ehlers-Danlos syndrome a genetic connective tissue disorder. But not all cases are the same. Izzy Kornblau launched a Youtube channel to raise awareness about this rare condition. She was diagnosed in 2017 at 20, after researching her condition for years.

“For me, it means I have really hyper-mobile joints. My skin is actually pretty stretchy, like I can stretch this further than the average skin, but it's also found in all of your organs. So, I have some issues with my stomach, with my autonomic nervous system and heart and my voice. And it's kind of just like affects everything. This is very common in EDS for a shoulder to dislocate and to be able to put it back yourself slash knowing how to because you always have to do it. A lot of people — especially friends — don't realize how I guess impacted I am by my conditions because like I've said, I look totally fine on the outside and you would have no idea that I have anything going on. There's just so much misinformation about Ehlers-Danlos syndrome. Even in just the medical field with the doctors, they oftentimes think, "it just means that you're hyper mobile and that your joints might dislocate, but it doesn't cause pain and it doesn't affect your organs," But that's totally false, Izzy Kornblau tells Brut.

According to the U.S. National Library of Medicine at least one in 5,000 people have some type of EDS around the world. Actor-director Lena Dunham, Actor Jameela Jamil and Pop star Sia, also have Ehlers-Danlos syndrome. Izzy is considered to be an ‘encyclopedia of knowledge’ regarding Ehlers-Danlos syndrome. Not only does she have the syndromes, but she also brings awareness to how different every patients symptoms can be.

Brut.

12/06/2019 12:57 PM

136 comments

  • Ninatypique A.
    09/21/2021 15:58

    I'm a 24yo woman with EDS and on the spectrum. I've been diagnosed after a whole life of pain injuries and other medical issues ... nobody believed me ... and still.... when I see a doctor most of them don't know it or worse think They know this condition ... but actually ... no. We're not 2 meters tall with an extremely stretch skin like in circus .... that is exhausted ! To explain for those who don't have it I'd say .... "you ever had the flu, gastroentrititis, teeth pain, cuts, burns, dislocation, sprain or tendinitis, malaise, lightheadedness, nausea, hypotension once ? ... well for me i'ts like having the flu + gastrenteritis + teeth pain + cuts and burns + 15 herniated vertebral discs + 3 sprains just by walking or cuting chesse + 2 tendinitis cause of brushing lmy teeths or standing, with a 80/60 blood pressure and around 40 subdislocations (jaw, shoulder, elbow, wrists, fingers, Carpal bones, hips, knees, ankles, toes ... ) every day "....

  • Jenny B.
    09/15/2021 21:54

    Lol my doctor Google’s EDS in front of me after I told her I had it. That’s the type of healthcare we have

  • Day L.
    08/19/2021 09:27

    I dont know this is an illness till i see this movie,yes i flex but i can ran really but i notices that my bones is aching specially my back at the neck area,i dont even know y its hurt so bad..

  • Julie A.
    08/07/2021 03:35

    Writer Sophie Strand's beautiful essay on Ehlers-Danlos Syndrome as mycelium metaphor. https://planetthrive.com/2021/08/connective-tissue-disease-as-mycelial-metaphor/

  • Harry R.
    07/18/2021 09:15

    Oh my god I have this my physio and gp told my there insurance n9 cure 😪 thank you for bringing so Barve to post this

  • Gemma B.
    06/28/2021 08:20

    this is what I was telling you about. It's not a winner that's that's sure 🤦‍♀️such a hard thing having to explain it to anyone.

  • Andrea G.
    05/08/2021 12:54

    If my daughter sleeps on her stomach, her shoulder dislocates. I fell twice, and shoulder dislocated. My grand can twist her feet completely backwards. My sister and I use to contort our bodies just because we were bored. Now I ache EVERYDAY!

  • Maria M.
    05/02/2021 13:20

    Gracias por hacernos visibles !!

  • Lucie C.
    03/29/2021 19:13

    j’ai pensé à toi

  • Riley T.
    01/21/2021 01:33

    I thought you might want to save this to share with people who need a quick run down on what it’s like for you living with EDS ❤️

  • Sarah C.
    12/18/2020 22:48

    omg yes this is what we were talking about and yes the person I know does have this!

  • Sjebhajabulane B.
    09/13/2020 14:18

    Hello everyone!! I was diagnosed of Genital Herpes Simplex Virus (HSV) in 2016 and I have tried all possible means to get cured, i even visited Some Hospital where they gave me some drugs like Famvir, Zovirax and Valtrex which are very expensive but all to no avail, until i saw a post in a health forum about a herbal doctor akuemokhan from West Africa who prepare herbal medicine to cure all kind of diseases including Herpes Simplex Virus, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email he sent me a herbal medicine through UPS delivery service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed i was totally cured of this deadly disease within 14 days of usage, if you are suffering of this diseases you can as well Contact this great herbal doctor via his Gmail [email protected] or whatsapp Dr akuemokhan on this +2349015985812 ? HIV/AIDS,DIABETES,CANCER,HEPATITIS ABC,DARIA,Chronic, Arthritis. God bless you sir.

  • Stefan A.
    08/15/2020 00:03

    Ask for your sit were are gentelmans they give you byatch

  • Darrett D.
    05/07/2020 04:14

    💛 thank you 💛

  • Angelina F.
    02/10/2020 00:47

    this is what I was talking about lol

  • Jacquelene M.
    02/07/2020 15:52

    omg I have this

  • Chris W.
    02/04/2020 01:53

    nipples

  • Silky D.
    02/03/2020 16:12

    Why is it only white people with these abilities 🧐🧐

  • Blake M.
    01/31/2020 00:53

    yeahhhh I feel like I need to get checked lol

  • Christine R.
    01/31/2020 00:26

    (Anthony ?)

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