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Veiny and thin skin


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How many of you have veiny skin. You can see the veins in many places on myself, my daughter, and son. I know collagen disorders like EDS is a cause of dysautonomia. Also my daughter and myself can do poses like "reverse namaste". There is something called Vascular EDS and that scares me. However my kids and I also have tired legs and exercise intolerance and I don't know how much that fits in. I took them to a geneticist when they were younger. My daughter has blue sclera and chilblains. He did say it could be EDS but a lot of kids are flexible. As far as vascular I expressed my concern.  My mother's mom and my mother's are very veiny. My mom has velvety smooth skin, but no vascular issues. My grandmother is extremely veiny. She has dilation of her abdominal aorta that they are keeping an eye on but she is 86. My fathers mother had diverticulitis and actually her sons (my father and his brother) had that condition as well. She also had a varicose vein rupture, but lived until 76. She passed from leukemia. All of this is overwhelming. I have seen countless specialist and no one is helping. I will be bringing my daughter to CHOP in May so that might shed some light. Just hope whatever it is it's treatable and nothing "horrible". Thank you in advance to anyone who reads this and takes the time to reply and offer some insight. 

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Try not to worry - without a family history of aneurysms it is pretty unlikely you have vascular EDS although it does sound like you and your family might have hypermobile EDS.  I had never heard of hEDS until I was diagnosed with POTS and the cardiologist noticed I was extremely hypermobile.  I had always known I was bendy I can reverse namaste and can still "W" sit even now I'm over 40 but I never thought that could explain my health issues!  He referred me to a rheumatologist (I had seen 2 previously who both told me I had fibromyalgia) but the 3rd one disagreed - he did several tests to assess my hypermobility, looked at my flat feet, my very stretchy skin (I can pull the skin (not the fat underneath but the actual skin) on my neck and my inner arm out by at least 3 cm), my very long skinny fingers, my awful stretch marks and asked about my medical history - I had all 4 back teeth removed as my jaw was too small for my wisdom teeth to come through and I have a very high arched hard palate, I have a mild bowel prolapse despite not having had kids, I experience what I now realise are subluxations (where the joint briefly dislocates when moved but returns to its proper place without needing to be manipulated) in my sacroiliac joints, ribs, wrists, shoulders etc and despite not having much family history (my great-grandmother had a shoulder which would dislocate on a weekly basis) he diagnosed me with hEDS. 

The criteria for hEDS can be found here - hEDS Diagnostic Checklist | The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com) If you don't fully meet it, you could still have HSD which is a milder form - the two are treated exactly the same, exercise to strengthen the muscles round the joints.  There is a genetic test for vEDS but it's not done routinely in the UK without evidence of aneurysms or a clear family history, I'm not sure what the rules are elsewhere.

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@cmep37

Aneurysms no.. diverticulitis does run in my family. My fathers grandfather had terrible varicose veins. One actually burst because it was sWollen. She actually had symtpoms Of POTS I believe. She was very veiny. My moM Is veiny but no issues. She did need blood transfusion after c section with my brothers and I (I'm a triplet). Other than that no issues. Her mother extremely veiny. She has dilation of abdominal aorta that they're keeping an eye on but she's 87.  Other than that nothing major. No one on either side has suffered as much as I have. 

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I definitely think you should be investigated for EDS although as I said I think it is much more likely you'll come out with a hEDS diagnosis than a vEDS one.  

My advice for your kids is to keep them as active as you can in low impact sports - swimming and cycling are both good for POTS and hEDS.  Even just a brisk walk is better than nothing; building leg muscles really helps return blood to the upper body quicker.  Find a baseline that they can tolerate every day however little this is - (when was bedbound and I started to exercise from bed my baseline was only 2 minutes a day!) and build from there.  Make sure they are really well hydrated - at least 2 litres of fluid a day.  If your daughter is having periods see if this is impacting on her symptoms - in my teens I only had POTS symptoms around the time of my period leading doctors to believe my problems were gynaecological and as they found I had endometriosis this view persisted well into my 20s. Taking the pill consecutively for 3 or 4 months at a time rather than having monthly bleeds helped me a lot.

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