A little worried...could I have vEDS?

[Lfilim01]

Hello,

I'm Lisa, 29 years old and here goes my story...

Back in 2017 I went to my dermatologist because my hair was falling out a lot. She ran some tests, one of them being an ANA which came back positive. I went to see a rheumy and she said i have mild Lupus...I should note, before I was diagnosed with mild lupus I noticed my heart would start skipping beats to which my GP sent me to get a heart scan in which everything came back normal except I had some PVCs... Anyway, a year after diagnosis I got pregnant with my second child. Pregnancy went well, delivery was FAST! Wasn't even able to get an epidural. After I had my second son I noticed some strange things going on with my body. My skin texture started changing and I my veins became more visible, my gums at my teeth started receding, my nail beds have turned a deep reddish color which scares me, when I stand up my legs and feet turn purple, and when I looked these things up I found my self on a sight which was giving vEDS symptoms. I started to panic. I do not have the facial characteristics, nor do I bruise easily, but my fingers are Hypermobile. Also after I gave birth to my second son I noticed my shoulders, knees, and ribs felt like they were loose. Really weird feeling. I have a few spider veins being but no vericose veins. I also wanted to mention my skin doesnt tear easily. But I have noticed the skin on my face looks like its age a bit in the span of 3 months...also I have been getting weird burning sensation all over my body. Don't know if thats related. I started thinking about family history and the only thing that I can think of is my great grandmother on my fathers side died at 33 years old from a heart attack but they claim its because she was running after her horse who escaped. My grandmother died at 77 and there are no other family members I could think of that are having any issues. I need some insight. Does it sound like vEDS? Could it be classical? I dont have stretchy skin...well its kinda stretch on my neck and face...thats about it. I have an docs appointment on Monday and i would like to mention the possibility of vEDS. I'm hoping he will refer me to a geneticist. Any thoughts? Opinions? Sorry for the long post!

[Dumplinglife19]

It's probably always wise to speak to your doctor if you're concerned and gene testing might be appropriate for other possible diagnosis however coming from a family that has Vascular EDS I would say symptoms don't tend to just start happening. My mum's whole body is made the way it is because of her vEDS. Everything that her skin and hair and body does is vEDS. She has never changed weight because of it, her hair has always been very thin and got thinner because of age. Her head size is in the lowest 10 percentile for women, her skin tears and bruises easily, worse now she is in her 60s but has never been normal. Although we did not know she has vEDS until my brother passed away, he was diagnosed and therfore we were all checked but the doctors all basically said you can see it in my mum and my brother, nothing changed in her we just knew she has it because it's what killed my brother. Please check if you are worried but from my experience I would say it is likely something else is going on as this is an extremely rare defect so I wouldn't worry yourself about something so unlikely. I hope you feel better and your doctor can help find you the right diagnosis and treatment options for whatever you are experiencing. Remember to always keep positive no matter what gets thrown at ya x

[gillianTS]

It is too easy to let ourselves run away with so many things when we try and discover what we are suffering with and searching for answers is natural but you have to ultimately get diagnosed and that in itself is difficult.

Make a brief list of what you feel you are suffering with and present this to your GP and explain your concerns.

As far as the red lunulae is concerned this does have a link to systemic lupus amongst other conditions, your hair loss fits with Lupus too. The following link explains the other conditions too associated with red lunulae and the reason why this happens:

ncbi.nlm.nih.gov/m/pubmed/2...

Given you have previously been given a diagnosis of Lupus it might be worth revisiting this in case this has moved from a mild form and you are now experiencing different symptoms from when you were first diagnosed.

Good luck with your appointment.

[Hidden]

I don't see how this connects to vascular EDS... This sounds like something you developed not something you were born with? It sounds more like an autoinmune disease maybe? But vEDS is something you are born with and your skin is like that since birthday... It doesn't turn that way one day. Usually there's family passing away not by heart attacks and would have many problems at pregnancies and nearly died when giving birth. If thinking about EDS because of Pots and stuff then you should think of hypermobile type... As you talk about signs seen in hipermobility spectrum (joints, fast delivery, pots) more than the vascular one. If you go to your doctor and ask about vascular maybe dismisses all of it, maybe talking about symptoms and suggest it could be a collagenopaty like EDS or another condition works better. Good luck with your diagnose... It takes so long for this kind of things.

[jay1236]

Sounds like diabetes 2. All the symtoms mentioned pint to that. Dr. can tell you for sure.

[Jamhol]

Have you gotten tested for veds?