Ehlers-Danlos Syndromes with Izzy Kornblau

[@charlottestandage2765]

Im really grateful to Izzy. My identical twin sister was diagnosed with hEDS in 2014. Although she told me about it, i never really researched it. Years later i started fainting snd she reminded me about hEDS and i looked it up. It was like a lightbulb moment. I then found Izzy's channel and learned about the diagnostic criteria. My first rheumatologist in NHS said i wasn't even hypermobil and didn't believe me that my identical twin sister was diagnosed. So i printed off her two diagnosis letters and took them to the hypermobility clinic where she was diagnosed and i was diagnosed on the sane day with hEDS. Ive been in physio for a year and a half now.

[@cookingwiththeshaws]

I have eds hypermobility type, and it has wrecked my body. My doctors are at the phase of telling me to wait for my joints to fuse. They tell me this will relieve some of the pain lol. More education in the medical community is desperately needed. I went through one nightmare after another during the past 25 years over this condition. Thank you for discussing this. ❤

[@shannongreenwell1278]

I am so grateful for Izzy sharing her story with everyone including me, I have Classical EDS and my niece has hEDS. We both got them from our parents, and I also have POTS + CCI due to my cEDS.

[@nildamartinez1971]

Ohhhhhhhh my goshhhhhh! I'm so grateful to come across this because now I'm getting tested along with my son and daughter who are both hypermobile. We just found out this year and I suspected my scoliosis + fusion had more to it.. my research lead me to learn more and never heard of EDS before 2024 and it's all starting to make sense for me. Please can we speak? Where can I get tested in Chicago Illinois?

[@chrisbrandt2056]

This seems like a poorly understood condition that is pretty prevalent in the population that is probably being under-reported. This is one of those conditions that tends to be a late diagnosis too after people have suffered with it for years.

[@MamaAng-o1v]

Would either of you recommend a company to get WGS to confirm VEDS?

[@Catlily5]

The geneticist refused to see me but told my PCP that I probably have EDS but that there is no cure so there is no point in diagnosing me.

[@melissafarrugia9531]

I advise you to not give up, don’t take crap from anyone as the diagnosis is something that can be very helpful, even to others in the family who may be affected. It’s expensive but it’s really worth it in my opinion because it can be the difference between being gaslighted or cared for. ❤

[@andreawisner7358]

So Izzy says that the hEDS does not involve cardiac issues other than POTS and orthostadic issues. I thought that it involved Mitral Valve pro lapse. If a person has or if a family has an issue with all or most of the heart valves plus Significant venous issues, what is that a sign of? I know it could be Marfan's syndrome, but if it's not that, should people get genetic testing find out the cause?

[@melissafarrugia9531]

I have myxomatous mitral valve, MCAS, POTs, low lying caecum (enteroptosis or visceroptosis) extremely underweight, gastrointestinal issues, visible veins, prominent ovarian and uterine varices, etc As I understand MVP (mitral valve prolapse) can be something that is associated with hEDS especially if we have a myxomatous mitral valve. I’ve had one genetics appointment with a cardiologist who is also a geneticist here in Australia, who said he suspects I have Hypermobility Spectrum Disorder. My results should be back around October, the test will be done in Finland. The most upsetting thing to me was that the Dr told me that I had a “stiff” heart valve! It’s actually the opposite! SMH thankfully I have a cardiologist geneticist 🙏

[@PartTimePermies]

Can you link Izzy's channel, please?

[@DNATodayPodcast]

Of course!! www.youtube.com/@IzzyKDNA

[@melissafarrugia9531]

Izzy am I wrong, but it appears that you have grey eyes, apparently grey is the rarest colour in eyes, and is because of collagen!!! My eyes are grey/blue but I have heterochromatic eyes with the ring around the outer edge. Iridial ring?

[@Kasstle]

I have vascular and cannot find good knowledgeable health care in my community.