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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
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127 comments

  • 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 🧐🧐

  • Sarah P.
    02/01/2020 19:19

    Steve Berrios

  • 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 ?)

  • Tim G.
    01/30/2020 15:19

    Really it's a woman they all do that

  • JayBird À.
    01/30/2020 06:29

    I notice that it didn’t mention the different types. What type you have drastically affects how it actually affects you, and even then some people aren’t affected as severely as others. For example, with the type that I have, my internal organs aren’t affected hardly at all. I haven’t had any issues with those. Nor is my skin super stretchy. Yes, it’s a little more stretchy than average, but it’s not anything that would make someone go ‘oh that’s really weird’. The type I have affects cartilage, ligaments, and tendons the most. I’ve had a surgery on both hips and my left shoulder, and I’m 21. Even then, there are types that will affect smaller joints the most (wrists, fingers, ankles) and types that affect the major joints (shoulders, hips, knees). Not everyone will always have chronic pain. I don’t have any yet. My mom didn’t have any until she had already had several different orthopedic surgeries. She’s now at 52 surgeries total. This also fails to mention a very important type.....the vascular type. True to the name, it affects the cardiovascular system the most. Most people with it die before 40, and it’s the only type that can actually kill you. Your aorta can literally just split wide open and you bleed out internally in minutes. There is far, FAR more to it than this video says.....and every person is affected differently. Try looking on the Mayo Clinic website for this. You’ll at least be able to learn about the different types.

  • James D.
    01/29/2020 14:06

    I don’t have stretchy skin but

  • Michelle L.
    01/29/2020 02:02

    !

  • Jenna B.
    01/28/2020 04:02

    I also have ehlers danlos syndrome. I was diagnosed with it at when I was 16 😔 theres days where I am in so much pain and still have to put a smile on my face like everything is ok so I dont get treated differently. Then I would just go home and at times just cry from the pain

  • Jason R.
    01/28/2020 02:44

    Poor girl. I have chronic pain too. I have no chronic and I'm pained. ;-)

  • Succulents N.
    01/27/2020 23:20

    A crappy disease to have! People with it feel like a old man/woman in a young persons body.

  • Eli R.
    01/27/2020 15:37

    what if I have this and it's why my skin is so stretchy lol

  • Patrick L.
    01/24/2020 19:38

    I have a lot of these "symptoms"

  • Monica T.
    01/24/2020 19:26

    I think I have this

  • Adia S.
    01/24/2020 00:17

    bennys neck stretches like that 🤔

  • Travis A.
    01/23/2020 03:06

    maybe this is why my shoulder and hips were and do hurt.

  • Lena S.
    01/22/2020 18:26

    have you seen this?