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Reload this Page Gulp...blood clots!

~Vascular EDS~ This forum is for the VEDS patients. Come here to talk about your daily lives, medications, doctor appointments etc. relating to this type of EDS.

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EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 01-11-2008   #1
ReineDeLaSeine14
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Gulp...blood clots!
I have an odd question...I know y'all aren't docs but maybe you can help me dig up info...

My mom had back surgery last year. Ever since she's been getting DVTs and superficial clots in her legs...can VEDS be the culprit of this?

She also has lupus but it's in the air as to whether she really has it or not...so I'm wondering if it could be EDS related but I have NO CLUE who to ask...that is until we see Dr. Francomano in Feb.

I have more VEDS features than my mom but it's still creepy...
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Old 01-11-2008   #2
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I'm not overly familiar with all the VEDS symptoms and whatnot since I don't have those features. Hope someone can give you an answer or lead you in the right direction. The only thing I could say is to do a webmd search or something for VEDS and look at the possible symptoms/manifestations.
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Old 01-11-2008   #3
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DVT, why does that sound familiar??? Whatever it is, I think my mom supposedly has it....
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Old 01-11-2008   #4
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Yeah they are these blood clots found deep in the legs...my mom was on Coumadin for a while but she's allergic and now just takes asprin. Her mouth bleeds every day...really gross.

it's Deep Vein Thrombosis and she also gets superficial clots. But she also has Lupus and i don't know if she's been tested for APS as she refuses to see her rheumy.
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Old 01-11-2008   #5
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Never mind...my mom doesn't have that...she has something else, I can't remember what it's called. I know it's been talked about before on Grey's Anatomy and ER. Like that helps any haha!
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Gwendolyn
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Old 01-11-2008   #6
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LOL everything medical i know i learned on TV? Great.
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Old 01-11-2008   #7
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Steph - I'd definitly ask the doctor about the VEDS. That's a very good point you have of her having it. Does anyone else in your family have EDS? Other then you? I mean , is it possible for her to have it? Then if so, then more then likely it probably is coming from the VEDS.
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Old 01-11-2008   #8
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Her sister has EDS I know....I'll let her tell you more hahaha.
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Old 01-11-2008   #9
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Both my mom and my sister have EDS.

My sister had a skin biopsy and her first sample fell apart so they had to do it over. It showed that she was missing some type of collagen (would be helpful if we knew which one!). Her stitches came out and my geneticist was like "Um we're not going to put you through that".

My mother has been diagnosed with Lupus but her rheumy thinks it may have been a false positive. I don't think she has APS which causes blood problems in Lupus. Thanks to aspirin she bleeds in her mouth EVERY DAY.

My geneticist noticed my blood vessels were dilated...i can stretch them out with my hands. Not to mention i'm transparent...people call me Casper the Friendly Ghost.

It's frightening...we're not sure where the EDS came from as my mom is one of five kids...one died at eleven from nephritis and pneumonia...and the others don't have EDS to speak of.

My grandmother got RA in her eighties and her legs are severely bowed. She usually complained of joint pain. My grandfather was Marfanoid...lean and lanky and long...and had multiple heart attacks and strokes but it didn't start until he was 65.

I too have Marfanoid Habitus and significant eye involvement. My echo is currently fine as is my EKG so Marfan's been ruled out.

I have EDS...but it's such that I span all the types...and may have more than one.
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Old 01-12-2008   #10
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Wow. That's alot going on there.
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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