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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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113 comments

  • Patrick L.
    a day

    I have a lot of these "symptoms"

  • Monica T.
    a day

    I think I have this

  • Adia S.
    2 days

    bennys neck stretches like that 🤔

  • Travis A.
    3 days

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

  • Lena S.
    3 days

    have you seen this?

  • Megan Y.
    4 days

    yeah my skin isn’t THAT stretchy if this is what you were talking about 😂

  • Seth R.
    5 days

    Tyler might actually have this.

  • Alicia H.
    6 days

    us...

  • Kayla C.
    7 days

    I’m almost convinced I have this dude lol

  • Samantha K.
    01/18/2020 16:59

    first time I've seen an EDS Awareness video

  • Ben P.
    01/17/2020 00:17

    i always knew you were a monster

  • Brandon P.
    01/16/2020 20:31

    found it

  • Jenna R.
    01/16/2020 04:12

    was it you that asked if I was super flexible? Could this be what you deal with? I couldn't remember if you were diagnosed with anything

  • Daphne I.
    01/16/2020 00:26

    From my own research I’m fairly certain that I have the hyper mobible variety of eds but my gp refuses to think so. She just thinks I have fibro and am also freakishly bendy but they think that it’s two different things.

  • Austin H.
    01/14/2020 18:51

    Disorder? Get out of here, it's just what it is. Why do ppl in medicine feel the need to call everything a disorder.

  • Ben H.
    01/14/2020 11:26

    I literally just said something about this on Snapchat like two minutes ago wtf!!

  • Gina S.
    01/14/2020 09:18

    Evan, I'm not double jointed or have thin skin. I do have degenerative joint disease though.

  • Sabrina B.
    01/14/2020 01:51

    Look it's getting more recognition

  • Leona G.
    01/13/2020 19:00

    this made me think of you! Lol

  • Jessica G.
    01/13/2020 15:09

    If I had stretchy skin I would match that description lol