Vascular Eds

[HopeSprings]

Has anyone pursued this? I definitely don't have classic EDS, but wonder if this one is a possibility. I do have the easy bruising (always have) and translucent skin with visible veins - plus POTS of course. I find the EDS POTS connection so interesting. It's like they go hand in hand. Is my Dr. going to laugh at me if I bring it up? Too much of a long shot or worth pursuing, you think? There's a blood test...

[Chaos]

Have you had any family members with aneurysms? Or sudden deaths at a young age from aneurysms? I think that's fairly common in families with vascular EDS. If I remember correctly, a lot of people with vascular EDS die before their 40's because of the weakness of the vessels. I think another thing they look at is how you heal from surgeries, wounds etc? Do you have prolonged healing times? Abnormal scarring?

I think I remember Mack's Mom saying in the past that the geneticist she saw was saying there were over 200 different connective tissue disorders so even if you don't have EDS of any type, you may still have some other type of HDCT (hereditary disorder of connective tissue).

[issie]

It's the kind you'd want to know if you had it - cause there could be BAD consequences associated with it. I asked a vascular doc. about it - since I haven't had genetic testing because the hypermobile form of it has no way to genetically test for. He said that if I had it, I would probably have had some sort of a rupture from it by now. I haven't so - he didn't think I had it. But, I have so many markers saying I might - but, maybe there is varying degrees of it. I don't know. But, he said with about 90% accuracy he didn't think I had it. So, I dropped it. They just keep a watch on your abdominal aortic artery and I have to have brain scans anyway for a brain tumor - so they keep a watch on the vessels in my brain already. So, nothing much else you can do about it anyway. Even if you do have it, not much can be done. You just mask the pain with pain meds and do things to prevent osteoporosis and osteoarthritis - cause both of these things go along with any type of EDS.

Issie

[HopeSprings]

Chaos- nope, no family history and I think I heal fine. Issie -thanks for the info and hope they're right that you don't have it. I saw my primary care Dr. today for really bad nightly leg pain, but also brought up vascular EDS. He didn't think it was totally out there, but didn't know much about it either. Surprised with all the EDS people, no one's had this blood test. Maybe it's more complicated than it seems or you have to wait for something to rupture first?!

[Chaos]

I had the blood test for vascular EDS. Thankfully it was negative.

[CharmedLinz]

I saw the same Doc as Chaos.... and was deemed NON EDS, but only the hypermobile type.

I know I have some type of Connective Tissue Disorder, but no I'm not hypermobile. Rather my joints slip in and out of place easily. Knee Caps are the worst, along with Rotator Cuffs, Fingers, and TMJ joints.

My TMJ Dentist did just tell me that he thinks I'm hypermobile.

I also am wondering about the vascular type because my skin is paper thin and you can see every vein in my body.

I do have history in the family of aortic aneurisms.

My Grandfather had AS and we believe Marfans or something like it. They found a congenital heart defect when they did a surgery, we don't know now what it was, so wish we could find out but it was too long ago.

His Mother dropped dead from an Aneurism.

Then there is my Mom who had SIDS, then Rheumatic Fever, then at 13 they thought she had appendicitis, opened her and found that her fallopian tube had burst and severed an artery, she was bleeding internally. She left that surgery with only one ovary.

I bruise very easily, but I clot and heal fine.

So I don't know.... maybe the geneticist I'm planning on seeing in Cleveland can figure it out.

I do have Cousins with known Collagen malfunctions, but not DX of EDS.

[HopeSprings]

I had the blood test for vascular EDS. Thankfully it was negative.

Who did the blood test? My PCP told me I'd need to go to a major medical institution and find someone with knowledge of this condition.

[brownsea]

i was dx with eds 3 two years ago, a year after being dx with pots. going over family history i decided to get in touch with the prof who dx my eds. he agreed that i should be tested for the vascular type.

two years ago i had a skin biopsy. three tiny pieces of skin removed from my upper, inner arm. although the test should of took a year, due to funding, i should get my results back this october. keeping my fingers crossed.

i have thin skin, the geneticist remarked on this, visible veins, easy briusing. my sister died when she was a baby, my aunt died at 21. also my three grandparents suddenly died. this all may just be a coincidence, however i feel better for being tested, so at least i will know.

along with the skin biopsy they took blood too. i think if i do have type 4 then any relatives can just go for a blood test to find out if they have the gene, i think thats what the prof said.

[Chaos]

The geneticist at the University hospital who diagnosed my EDS-HM was the one who ordered the blood test for EDS-4.

[HopeSprings]

The geneticist at the University hospital who diagnosed my EDS-HM was the one who ordered the blood test for EDS-4.

Ohhh - you have EDS (I missed that). I guess my thinking on this has been what if there's just something wrong with the veins themselves - a simple explanation. Stretchy veins equals pooling equals tachycardia.

[ken870]

I have vascular knots in the back of my head could this be vascular eds.

[lillybits]

need to see a geneticist. they can do most of the testing thru blood work any more. I have vascular eds I am just following suit from my dad 60 is old in my family so I am just thankful for every day that I can wake up and see my kids!almost 33 and still kickin!

kim