Vitiligo

lala5507

Does anyone have vitiligo or know anyone who does?   My 3 year old was just diagnosed with vitiligo.  Although, it is not a dangerous or life threatening disease (and I am so grateful it's not), it's still a little heartbreaking to watch her perfect baby skin be forever changed.  she is fair skinned, so she does have that going for her.  It would be much more noticeable if she was of a different race but it is still noticable.  Most of her spots are on her legs but she does already have some on her face around her eyes.  It just makes me so sad to think that some day she is going to be teased because of it or have to explain to people why she looks like this. 

The dermatologist started her on some lotions to try to bring the pigment back.  We haven't noticed much difference yet and we can't use them on her face.  She said that she thinks dd would be a good candidate for some kind of light treatment, but said she's too young to do it right now. 

I have never met anyone with this disease.  So I am just looking to see if anyone has any first hand experience.   thanks. 

lishie

My boss has it. He was diagnosed when he was in the military, so probably about 25 years ago.

He's pretty light skinned, and the only place it's at all noticeable to me is his hands, and even then it's not terrible. Parts of his hands are a shade or two lighter than others.

AmandaJLewis

I don't have any experience, though I wonder if this is what K's grandfather has as his skin is oddly splotchy on his arms and hands.  But I do understand the feelings you must be having, I think I went through something similar when EJ was diagnosed with her food allergies and again when I realized the asthma was not just a one-time thing but a chronic condition.  It sucks to have your "perfect" child diagnosed with a chronic condition, no mater what it is.

billiburrows

my mom and brother have it.  they developed them later in life so perhaps that's why they weren't candidates for treatment?

my mom has it on her hands and feet the worst but also has little patches on knees, elbows, back of neck.  she also has diabetes and i think they are sometimes linked?

my brother has it also on his shin, hands and i'm not sure where else. my brother does not have diabetes.

it really isn't that big of a deal.  She used to work as a flight attendant and would be passing out beverage to people and sometimes would be asked if she was a burn victim or something.  she also has darker skin so the contrast is more noticible.  maybe i'm just used to it so i don't notice it at all anymore. i don't even think about it.  my brother developed it in his 20's and he was pretty upset about it.  but its not very severe or anything.  i think he tried some creams but really both of them found there isn't really anything you can do.   sorry to hear your little one has it. i'd be sad if my kid had it too. and he may since we have the family history.  but really, you get used to it and its not harmful. and hopefully hers isn't too severe.  

fyi- michael jackson might have had this and this is why he 'bleached' his skin and looked white....so he could even out his skin tone. thought that was interesting.

4EvR&4AlWz

It's an immunologic disease so almost impossible to "treat".

Back in my days when I thought I wanted to be a dermatologist, I knew a ton of people with vitiligo.  There's a camp for children with skin conditions (99% of the kids have conditions way worse than vitiligo) that I volunteered at for several summers.  However, vitiligo on the face can still be quite difficult for children to deal with.  It's called Camp Horizon (in Danville) and the overall camp is Camp Discovery which has multiple locations in the country.  You may want to look into it when she's a little older.

lala5507

4EvR&4AlWz said:

It's an immunologic disease so almost impossible to "treat".

Back in my days when I thought I wanted to be a dermatologist, I knew a ton of people with vitiligo.  There's a camp for children with skin conditions (99% of the kids have conditions way worse than vitiligo) that I volunteered at for several summers.  However, vitiligo on the face can still be quite difficult for children to deal with.  It's called Camp Horizon (in Danville) and the overall camp is Camp Discovery which has multiple locations in the country.  You may want to look into it when she's a little older.

Thank you for the info. We have no idea how it's going to spread.  Hopefully it will be little spots that don't cause her much emotional stress but if it does get worse and does bother her, it's nice to know there are places we can turn to.  I have an autoimmune disease and so does my mom, so it's not a total surprise that dd has one.  And I know there are much worse autoimmune diseases that she could have gotten. 

lala5507

Thanks for all the responses. The only person I ever knew of that had vitiligo was Michael Jackson and I think the media made it sound like he had some strange and mysterious disease. 

The doctor said that it normally shows up in places where there was a trauma (skinned knee) or friction (she rubs her eyes with her stuffed bear a lot).  I know there is no way I can prevent all the scrapes and cuts and bumps in her future.  She is a clumsy 3 year old.  I will just have to wrap her in bubble wrap when she rides her bike. 

northhillsbride

I have it on my face - only started around my early 30s. It's embarassing in the summer, when I get tan (which I do try to avoid with sunblock, etc., but my skin still darkens). The pale part/vitiligo part gets red, then fades right back to white. It's pretty noticeable, and I try to use foundation to blend it all in.

Since there is nothing I can do, though, I just look past it.

I'm sorry your DD has to deal with this. Depending on how it develops, I'm sure there will times where it is hard on her, but all you can do is just stay in regular contact with her doctor and wok through it together.

And, fwiw, I don't know of any creams or anything to help it. Good luck!

carcrashheart

my mom has it. it gets worse/more noticeable when she has been out in the sun. so, tanning is no longer an option for her. even when she hasn't been in the sun the spots are noticeable on her hands and arms, but they're not horrific. she didn't always have it. it's an autoimmune disease so if you have had an autoimmune disease then she was likely to have one as well. my sisters and i ended up with thyroid issues.