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Special Needs
Rose.9.6.03
member
While I'm on here - any dermatological issues?
Rose.9.6.03
member
I'm mostly a lurker because my DD's special needs are largely dermatological and I haven't seen anyone talk about that on here. She's got some very rare skin and hair conditions (epidermal nevus, woolly hair nevus, and palmoplantar keratoderma) - so I don't expect anyone to specifically be dealing with those. But I was just wondering if anyone else was dealing with derm issues and what your story might be.
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Re: While I'm on here - any dermatological issues?
Oh, auntie, I'm so sorry. How devastating.
Did your friend's niece have EB? DD's deem runs an EB clinic, so we see a lot of kids with EB in the waiting area. It just looks so horribly painful.
Thankfully, DD's derm issues are mostly cosmetic. She did have recurrent infection on one part of her epidermal nevus, but she had that part surgically removed in November. She's monitored for a host of other issues associated with her derm issues (cardiomyopathy, ocular abnormalities, neurological problems, and scoliosis), but she's been healthy so far on all those fronts.
1. they are so big & gorgeous.
2. I don't know if this is the same as the one issue, but a girl that I used to work with had a palm/sole issue, I never noticed it until she told me about it though. Her hands were orange (like oompa loompa orange) and they were rougher than normal. But, like I said we worked together (in a pharmacy) so I was always near her hands and it never stood out. She saw a derm and treated her conditions and was big into lotions/topical stuff.
I hope you can find someone else on here who has some derm issues as well. Have you tried Madisons foundation to connect?
1. Thanks!
2. Sounds like it could be PPK. There are other things that are similar, too. But it sounds a lot like DD's palms. Hers are not orange, but bright pink. Hers are also patchy because it's a mosiacism. It doesn't bother her at all, right now. And it wasn't something I noticed until the derm pointed it out to me.
- I have tried Madison's foundation with no luck. I did find a yahoo group for people with epidermal nevus syndrome, but it not all that active and doesn't deal with many of DD's issues.
My daughter has an extremely rare skin condition. Luckily it doesn't seem bother her more than having to search for shoes because her feet are so thick. She has "thick skin." I guess it has only been documented 20 times, so she would be the 21st case.
That being said, since she has other issues and we were working with genetics, we pursued this. If she didn't have other issues, we probably wouldn't have had a skin biopsy and discovered it, so it is probably a little more common than it seems. We even had my husband go to get a biopsy to see if he had it as well, which would help us feel a little more at ease about the long term affect.
Hopefully that will be the extent of our experience with derm, and this probably isn't the type of support you were looking for, but I thought I would share! Your daughters are beautiful!