Izzy is a genetic counselling student at the Icahn School of Medicine at Mount Sinai with a special interest in genetic connective tissue disorders. She doesn’t have Loeys-Dietz syndrome, but has a different connective tissue disorder that shares some features with LDS and is called Hypermobile Ehlers-Danlos syndrome (hEDS).
On hEDS and the importance of talking about chronic illness, Izzy says:
“I was diagnosed about 5 years ago after many years of dizziness, joint pain, dysphonia, stomach pain, frequent injuries, and so many other symptoms that seemed unconnected and extremely random. I felt like all these issues had to be connected by one condition despite my doctors’ inability to find that condition. It took around 7 years of actively looking for a diagnosis before we discovered the condition that connected it all.
It’s so important to me to talk about the chronic illness aspects of my life on YouTube because I wish so badly I could have heard someone else’s experiences back when I didn’t know anyone my age going through this. Chronic illness creates a lot of uncertainty in my life that otherwise wouldn’t be there to the same extent – fear of my future health, fear of not feeling well when I’m traveling or in a social situation, needing to plan ahead in ways that others don’t, etc.
When you’re the only you know who has to do this it feels so much scarier and lonelier. It doesn’t feel like a version of normal. However, there are SO MANY people who have the same or similar fears and have to incorporate medical things into their daily life. If you don’t know any of them in your personal life, joining online support groups and attending chronic illness meet ups to befriend others can be life-changing! Another option is watching a YouTuber like myself share my experiences (and in my case, educate too!). Not only does spreading awareness for Loeys-Dietz syndrome inform the general public, impact politics, and lead to better treatment and care, it also creates so many opportunities for people to connect and share understanding of what life is like with LDS.”
To learn more about Izzy’s content:
Instagram: @izzy.kornblau
YouTube: https://youtube.com/c/IzzyKornblau