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.