What is Vascular Ehlers-Danlos Syndrome?
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- Опубликовано: 25 мар 2024
- In this video, I branch out from the usual Hypermobile EDS content to talk about Vascular EDS. I'll be giving each of the other rarer EDS subtypes their own videos, so stay tuned!
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Do you have vEDS? How and when did you find out?
I know of another RUclips channel blogger who has vEDS. Katie Wright. I have asked our ECHO machine what is Ehlers- Danlos Syndrome and it gave us the definition of what vEDS was. I guess that’s the only one that Amazon is familiar with.
@@shannongreenwell1278 that's interesting!
@@shannongreenwell1278 I used to follow a woman with Vascular EDS on RUclips. She mostly did videos about autism. She hasn't done any videos for about two years.
I was just diagnosised 2 days ago, it came about as I has issues with blockages with both my kidney and hip, meaning loss of blood supply and parts of them dying, I'm waiting to see if I can get a hip replacement but with thie vEDs disgnosis. I don't know whats going to happen. I'm also worried since I'm 39 and everything I read up on says life expectancy is up to 50 years old. its alittle overwhelming if I'm honest
I can only imagine how overwhelming that must feel for you. I hope you can get that hip replacement; quality of life is so important. The average life expectancy might be young, but many people with vEDS do live well into old age. Gentle hugs and well wishes for what comes next for you!
@@ehlersdanlosandi thank you
My doctor suggested that I may have EDS after I visited him after sudden leg pain after he noticed my fingertips going fully backwards while pressing my face. What am I supposed to do if I have this and I don't see a specialist for months.....
I would suggest seeing your primary care provider about whatever problems are affecting you that you feel are urgent. Even if your doc refers you out to a specialist because your problem is more complicated than they can handle themselves, you can still ask what you can try to do in the meantime to alleviate the symptoms you're experiencing while waiting for the specialist. I've also found online EDS support groups helpful for EDS specific problems. You can see what has worked and not worked for other people.
@ehlersdanlosandi Is there a way I can get tested for vascular eds sooner? I looked into support groups and there are none in my area to go to and I'm not sure how I feel about online supports. I'm currently on medications that make my muscles weaker and I need that medication in order to breath so I'm not sure what to do. I emailed the EDS society and they sent me a packet of info about seeing a rheumatologist. I know you're not a doctor but anything helps.
@teinwinbaldikan989 usually if your doctor wrote specifically in your referral that that he suspects vascular EDS, your referral will be fast tracked and you'll get bumped ahead of other people waiting. Is there a reason you think you have the vascular type over just having the hypermobile type?
@teinwinbaldikan989 if you have a specific medical issue you want my thoughts on (obviously I can't give actual medical advice), you can email me at ehlersdanlosandi@gmail.com and I can do my best to help.
@ehlersdanlosandi I was watching another video by the Izzy EDS lady and she was going through the different types of EDS and I droned through the video (since I've been kind of depressed after receiving news I may have EDS etc) and my brain caught on to "sigmoid colon" after it was mentioned and I rewinded the video to see specifically what type she was talking about. I had to have my lower colon removed when I was 16 because it was distended to the size of my torso (which this had gone on for years at this point as far as cn remember). My hands have always been pretty old looking as well and my fingertips are probably the most noticiable hyperflexable thing other than bending my fingers back and being able to scratch my lower neck/upper back eith my left arm. If they bump me up on the waiting period if my suspicions are true it would probably help because I'm getting close to 23 and I've never really had vascular problems (to my knowledge given my parents refused to treat me at a hospital for the majority of my illnesses) but I've always become faint when someones talking about the pulminary system and I never knew why.
I was just diagnosed with hypermobile EDS about a month ago and the more I learn about EDS, the more convinced I am that I have the vascular type. I did read its rare but u may have more than one type if both parents pass on a mutation. But I am still new to all of this. My doctor did order more testing but didnt mention any genetic testing. I am very hypermobile, especially in my small joints and have very translucent skin that show my veins everywhere. My hands look very old snd my veins literally bulge like a 90 yr old yet I am only 39. I hemorrhaged when I had my daughter at 22 and lost half the blood in my body. And last year was diagnosed with endometriosis due to a mass(likely endometrioma) rupturing. I presented to the ER with severe pelvic heaviness and pain. Thought I had an impacted bowel as I have terrible GI symptoms every single day. But after abnormal blood work, a ct scan anf then ultrasound was ordered. Was told by the ER dr that I had a mass on my left ovary which is prob what was on the right side and had ruptured, creatinf a large collection of free fluid in my pelvis. Also noted I may have pelvic congestion syndrome due to enlarged bilateral ovarian veins. I bleed and bruise very easy. And always have a very low platelet count along with high mean platelet volume. All which are indicated in vascular eds. How do I ask my dr for genetic testing to see if its vEDS without offending her??? I assume she looked my chart over and seen the amount of things that may indicate the more serious type... And I keep reading how EDS is so rare in and of itself, vut I know two girls I went to high school with, one of which was a very close friend, who now as adults have been diagnosed with EDS. So its hard to believe some of the stuff I have read. I believe it is common, just rarely diagnosed. Any thoughts??
I definitely believe hEDS is common, just underdiagnosed. I would talk to your doctor directly about your vEDS suspicion, and explain exactly why you're worried. Most general doctors aren't comfortable ordering genetic testing because they don't have training in how to interpret the results, but they can at least refer you to a geneticist. Most genetics clinics will fast track you for an appointment if vEDS is suspected since it's so serious.