What is the Ehlers-Danlos Syndrome? | Brut

preview_player
Показать описание
Stretchy skin, hypermobility, dislocations — these symptoms can be a sign of Ehlers-Danlos syndrome, a rare genetic connective tissue disorder that affects people in multiple ways.

Izzy Kornblau, who has EDS, launched a YouTube channel to raise awareness about the condition. She’d been researching what was happening with her body for years before being diagnosed in 2017. Now, she hopes others like her can sooner learn why they may be experiencing EDS symptoms.

For Kornblau, EDS means she has hypermobile joints and stretchy skin. It also affects her stomach, autonomic nervous system, heart, and voice. She says that she feels people don't realize how much EDS patients are impacted by their condition day-to-day, and that some medical professionals have a lack of information on the condition.

According the U.S. National Library of Medicine, at least one in 5,000 people have some type of EDS around the world. Kornblau, who now considers herself an “encyclopedia of knowledge” on Ehlers-Danlos syndrome, says she hopes to teach the world much more about the condition.

📲Watch the newest Brut videos on our mobile apps:

Discover More Brut:

Brut is an international video content publisher covering politics, technology, social justice, culture, and more. #brut #brutamerica #brutdocs
Рекомендации по теме
Комментарии
Автор

I was diagnosed by a geneticist this year at 67. My body is shot. It started with knee issues at 12. I was kept out of gym from 7th grade thru graduation. I didn't have dislocations as much. Thumb to wrist, pinkie up straight. I hemoraghed after the births of my 3 kids. Prolapssed uterus and bladder at 37. Hysterectomy at 38. I need both shoulders and my other knee replaced at the moment. I'm in constant horrible pain. My spine is shot too. This illness kicks ass when you're my age.

Fuphyter
Автор

Thank you for posting this, EDS is debilitating and I have had many surgeries and treatments. It runs in my family, and my daughter has it too. Awareness brings knowledge!!

justrobin
Автор

I have been recently diagnosed with this condition. I am 23. I have also noticed a constant fatigue with this condition, as I feel as if I am never fully rested. I am at least glad I found an answer to everything. I also have pretty intense joint pains too.

EpicCD
Автор

I’m in the process of getting diagnosed with EDS. I’m in the paral doxical dilemma of where I am almost positive. It’s EDS but the doctor hasn’t brought it up yet.

They told me I have some sort of mixed connective tissue disease, because apparently my collagen levels or there were centromere in my blood. That’s why I got referred there in the first place. I actually was told to do research about EDS by someone in my chronic illness Facebook group.

I’ve been dealing with these symptoms for years and they’ve gotten very severe to the point where my blood pressure and stuff is really high so I feel like I don’t have a lot of time to try to figure out what’s going on.

My doctor basically put me on a whole bunch of medication and then said that he would see me in two months.

breannapiscitelli
Автор

Weird my skin isn’t really stretchy but I have like EVERY possible comorbidity lol.

amber
Автор

My appointment to get tested is tomorrow. I'm hoping this is the right doctor as I've had many poor experiences up to this point. Fingers crossed

caitreed
Автор

Niccola Paganini, considered to be one of the best violinists in the world, is thought to have had this syndrome. He had extremely long fingers and would move his arms and wrists in a way considered physically impossible to achieve playing the most difficult notes.

caroh
Автор

I'm on pain meds 6x a day and I wasn't diagnosed for almost 30 years. I've heard about this illness for the first time from my new neurologist at the beginning of this year and it turns out she was right, but because of how "trendy" this illness is apparently on tiktok and instagram (i wasnt aware because I do not have account) it was really hard to get a second opinion because other doctors treated me like I'm "another social media addict hypochondriac"

iloveminiapplepies
Автор

I dont have EDS but I have voice issues, so I feel your pain

vjcarter
Автор

Wow I'm so happy to see this on the news! Can you link her youtube channel? thanks!

yankeeslover
Автор

I have had successive surgeries fail - most recently on my jaw joints. What kind of doctor can diagnose EDS? I'm afraid this is the reason, after years of failed surgery.
I'm not excessively hypermobile but somewhat - I can do splits and my skin is pretty stretchy - I always am told I look much younger. My mother has scoliosis. I'm also half Jewish. I am worried but maybe I can get help so my next surgery won't fail! Izzy - thank you!

erikavaleries
Автор

What kind of knee stabilization orthosis are you wearing? Do you happen to have a link to it?

BlueBearOne
Автор

My sister has EDS type 4. I have what they say is Fibromyalgia...but I have not got all the testing my sister has had done. We live in different provinces...hard to get tested here. Does anyone have any experiences with type 4 that they would like to share with me?

stacyrobinson
Автор

I’m the exact same symptoms, besides I somehow have essential tremor also and can’t drink coffee.

I feel for everyone with this range of symptoms, it sucks…

Scott_Silver
Автор

²/4 of us, siblings have EDS.
Damn, age 38, facing prolapse uterus. On top of that I have acm type 1, diagnosed 10+ years back.

chuinklp
Автор

I suspect I have this. I’ve been in so much pain for the past couple years and I can do all the bendy things. I can’t even count how many doctors visits and specialists I’ve been to. How do you actually get diagnosed? What kind of doctor do you need to see? A neurologist?

JustJulia-qtnh
Автор

I thought this was just normal 😨 stuff
😢

IvySnowFillyVideos
Автор

my mom has EDS and my skin is very stretchy. I think I might have to get myself diagnosed sometime 😬

Ryan_vdp
Автор

I don’t have the stretchy skin. The rest, yes.

ajohnson
Автор

Wtf? I just came to know that its a genetic disorder, i just turned 20 and i have all the symptoms which you mentioned, but i dont find it painful to stand for long or do normal physical tasks yet, its just now ive realised this and i dont know what to do, i am not in panic, because i dont find I negative as of now yet, and im positive want to stay disciplined and follow what has to be followed, im going to i subscribe to your channel and would like to know more about this condition as well. I appreciate it and i think im gonna do something about it, omygosh

Zingzangzongzil
visit shbcf.ru