Vitiligo Moms?

ConversationFear · April 2014

It's not all that common, so I might get a dead end, but just thought I would throw this out there - any mom's on board with Vitiligo? If so, have you spoken with your doctor about odds that your little one might inherit it? If you don't have it do you know any moms that have it or that have children with it?

Mine started surfacing up when I was 4, so I've lived with it my whole life. While I and my friends and family don't hardly notice it at all anymore, and yes - it's only cosmetic - it was rough when I was a kid - as we all know - kids can be cruel. I feel like I am well-equipped to raise and counsel a child with it, but of course, you pray that they don't ever have to deal with it at all.

Just thought I would see if there were any other Vitiligo moms out there!

brittneyandadam · April 2014

I have a really good friend with vitiligo that I met at summer camp and I worked with a girl a few years ago who had it as well. I'm not familiar with the specific inheritance patterns, but from what I read, it's unpredictable. Below is my go-to site for genetics information.

https://ghr.nlm.nih.gov/condition/vitiligo

I grew up with plaque psoriasis and TOTALLY understand how cruel kids can be. When I took Humira, it was the first time I had worn shorts in the summer in about 15 years. I went off of it when we started TTC and it came back with a vengeance after my BFP. It's mostly cosmetic, but I get really itchy and sore in the winter.

favretk · April 2014

My grandmother has it, and none of her 4 children, 8 grandchildren, or 6 great-grandchildren have it! (Some of the great-grand kids are still pretty young, tho)

cmumama · April 2014

My oldest son has it. It popped up about 2 years ago. He's very fair anyway so it's not too noticeable, but I am so nervous about how it will look as he gets older and how kids will treat him.

Do you do anything to treat it? I know it will never go away, but I was just curious.

LTMama · April 2014

So random, I haven't met anyone with vitiligo in years! Mine showed up around age 6, and by the time I turned 20, I decided to start treatments to depigment the remainder of my skin because it had spread so far. Never regretted it, since now at least I'm even. I had tried PUVA treatments for years but they didn't do much for me.

I remember reading a statistic a while back, that you have a 2% chance? Or 5% chance? Of having kids with vitiligo. So it's pretty unlikely. No one in my family has it, either.

Don't worry!

wcjc7707 · April 2014

I have it! Mine popped up after an allergic reaction when I was 14. It doesn't show as bad as it used to because I am more cognizant of using sunscreen to prevent getting a tan around my spots. Neither of my sons have it.

ConversationFear · April 2014

@brittneyandadam & @cbear2010 - I'm not sure of your dietary intake, but a close friend of mine has had psoriasis her whole life and she recently (in the past year) started eating a gluten free diet and claims it has done wonders for flair ups. Every now and then she will "fall of the gluten free wagon" and she has a flare-up, but when she sticks with it, it seems to work out well.

@cmumama - While it's fortunate that Vitiligo is only a cosmetic issue, it's stressful because there's no way to tell how it's going to spread - so I totally understand your concern for your son as an adult. I've known some people that have it confined to one area. There there are people like me where it's all over the place. Even then, there are people like me who have it in rather discreet areas (the only time it's really obvious is the middle of summer when you can see it on my hands and elbows against my tan skin) and there are some people that do not. I've never had treatment for any of it. When I was first diagnosed, there wasn't anything that could be done and honestly, over the years, I've learned to live with it. I think the most important thing you can do for your son is teach him that it's not a big deal and how to talk to kids about what it is - because they will ask. For the most part, most kids are just curious about what it is, but there are always a few select mini assholes in the bunch. Those are the ones your son can do without anyway.

@LTMama - That's pretty amazing that you did the skin bleaching, I never thought about doing it, mostly because mine are pretty discreet (with the majority under my clothes). I know the risks are pretty small that our child would have it, and that it can be totally random. The only person we know of in our family taht had it was a 2nd cousin of my grandmother. One of HER grandson's had a small spot of it and that was it otherwise. Not sure how it leaped over to me, but there it is!

LTMama · April 2014

ConversationFear said:

@LTMama - That's pretty amazing that you did the skin bleaching, I never thought about doing it, mostly because mine are pretty discreet (with the majority under my clothes). I know the risks are pretty small that our child would have it, and that it can be totally random. The only person we know of in our family taht had it was a 2nd cousin of my grandmother. One of HER grandson's had a small spot of it and that was it otherwise. Not sure how it leaped over to me, but there it is!

Yeah I'm really glad I did it. Mine had spread a lot though - by the time I started treatments, probably 50% of my visible skin had lost pigment already. I had it all over my face, neck, arms, legs... so it just made sense for me, as in a lot of areas I had more depigmented skin than pigmented. On my face I pretty much just had a few areas that still had pigment left, so I got rid of them. I'm super pale now, which took some getting used to, but it's nice to be all one color and not have to worry about it. I still need to wear tons of sunscreen, but that's a good idea anyway.

brittneyandadam · April 2014

@conversationfear I actually talked to my dermatologist about that. They said that I could try it, but if I don't have any other gluten-intolerance symptoms, then it probably wouldn't do much.

ConversationFear · April 2014

brittneyandadam said:

@conversationfear I actually talked to my dermatologist about that. They said that I could try it, but if I don't have any other gluten-intolerance symptoms, then it probably wouldn't do much.

My friend didn't have any other symptoms either - it was just something she found during research about how to control it naturally. She's also a strict vegetarian so I don't know if that makes any difference either. I personally think gluten-free sounds like it sucks - but just thought I would throw it out there in case you hadn't heard of doing that for psoriasis. Good luck!

cmumama · April 2014

ConversationFear said:

@cmumama - While it's fortunate that Vitiligo is only a cosmetic issue, it's stressful because there's no way to tell how it's going to spread - so I totally understand your concern for your son as an adult. I've known some people that have it confined to one area. There there are people like me where it's all over the place. Even then, there are people like me who have it in rather discreet areas (the only time it's really obvious is the middle of summer when you can see it on my hands and elbows against my tan skin) and there are some people that do not. I've never had treatment for any of it. When I was first diagnosed, there wasn't anything that could be done and honestly, over the years, I've learned to live with it. I think the most important thing you can do for your son is teach him that it's not a big deal and how to talk to kids about what it is - because they will ask. For the most part, most kids are just curious about what it is, but there are always a few select mini assholes in the bunch. Those are the ones your son can do without anyway.

Thanks for the reply! So far it's just on his tummy and not really obvious. He doesn't even know it's there. I'll definitely talk to him about it when he's a little older though. He's got a genetic disorder too, so we'll have lots to talk about.

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