What is Cardiac-Valvular Ehlers-Danlos Syndrome?

[@ehlersdanlosandi]

Do you or anyone you know have cvEDS?

[@christinahurt7505]

I don't know anyone with this diagnosis but I have EDS with hypermobility, heart valve probkem since 19 yrs old (MVP), POTS since my teens, and very stretchy skin. There is a history of MVP, dysautonomia and other cardiac problems on my mother's side. My mom just had mitral valve repair 2 days ago. I am likely going to need the same procedure in the future

[@ehlersdanlosandi]

@@christinahurt7505 I'm sorry to hear about your MVP. I hope your mom's surgery went well!

[@christinahurt7505]

@@ehlersdanlosandi my mom's surgery went very well. She had the MitraClip procedure. Thank you.

[@shannongreenwell1278]

I don’t know anyone who has this, I have cEDS, POTS+ CCI. My mom had Osteogenesis and Tachycardia of some type.

[@teresaorth7832]

I am trying to get the genetic testing. I meet most all of the criteria for this form.I have done my research and believe I have this. My niece is suspected of the vascular kind. I am 67. It is progressing.

[@ehlersdanlosandi]

@teresaorth7832 I hope you get your testing, don't give up!

[@ashatan4554]

Does anyone know if everyone with EDS has the soft stretchy skin? I the hyper mobile joints and as I age I am becoming pretty deformed from hyperextended knees hips and ankles. Since I have chronic pain I have been diagnosed with Fibromyalgia.

[@ehlersdanlosandi]

@ashatan4554 No, not everyone with EDS has soft stretchy skin, except for some subtypes. The most common type, Hypermobile EDS, soft stretchy skin can and is often seen, but you don't have to have it to be diagnosed. I made a really detailed video on the diagnostic criteria for Hypermobile EDS if you're interested in learning more. It's maybe my 3rd or 4th video, so you'll have to scroll way down to find it!

[@shannongreenwell1278]

@@ehlersdanlosandi I have EDS- Classical type and it causes me to have soft stretchy skin.

[@sahilbansal396]

HSD develop cardiac problem yes or no all patient

[@ehlersdanlosandi]

@@sahilbansal396 No, not all HSD patients.