Vitiligo (4 year old dd)

(2 Posts)
islandmummy Tue 10-Nov-15 17:40:22

Posting here for the 2nd time in as many days as I know the mumsnet wisdom will be useful!

A couple of months ago my 4yo dd was diagnosed with vitiligo. At the time she had a small square-ish patch on the side of her knee about 2cm square and a couple of smaller (mole-sized) spots on her leg and on her back. We saw a dermatologist who advised that the patches might be reversible with steroid creams. At the time my thoughts were no, as dd was unaware and it made no difference to us, the patches aren't harmful etc, so it just seemed to be a cosmetic decision and I wasn't prepared to give her steroids just for cosmetic reasons.

However, today dd has come home from school pointing out other small patches on her arms and it has made me question my decision - not for the 4yo she is now, but thinking ahead to how she'll feel about these patches when she's older. I don't know whether we should try and treat them now to avoid her being self conscious when she's older.

Has anyone else had dc with vitiligo? How do they feel about it? Do any adults have it and how do you feel about it?

TIA x

ToesAndFingersCrossed Fri 20-Nov-15 02:08:51

Hi I just saw you post, I know it was posted a wee while ago but wanted to reply.

I have vitiligo and to be honest it's not really bothered me. I don't think it is very treatable though. The steroids could work, or they could not. It's pretty devastating if you're vested in it working and it doesn't, so I never really bothered trying.

Growing up with it wasn't a huge issue for me - sunburn was a big problem because my parents struggled to remember that we needed to reapply sunblock very regularly to my white patche, so I would often burn there. But that made me learn pretty quickly, so now I'm very vigilant!

My patches never spread or grew that much bigger, so like your daughter I simply have mole sized ones dotted around my body. When I was a teen I LOVED the one on my head because I had a streak of white hair and it looked soooo cool. Now it just looks like the rest of my greys.

At the same time, I do have some vitiligo on my breasts which I really struggled with as a teen. Luckily the patches are all contained within the area covered by a bra, so wearing bikinis on holiday wasn't an issue. But I was very, very worried about how it would affect my sex life, especially before I was anywhere near having a sex life!! As it turns out, teenage boys are just so happy to see boobs they don't care about a few weird white patterns, and grown men don't give a damn at all because they love you for who you are not your skin colour. I did go through a phase of trying to layer up fake tan on my boobs to make it blend in with the rest of my skin a bit. But weirdly never cared much about the patches on my legs or back.

The Red Cross do regularly hold camouflage clinics where they teach you to apply makeup to hide your vitiligo which I think you gp can refer you dd to. I think you can buy the cosmetics from them and they are very good. I don't know that many people who use them though.

I definately grew up thinking this was just a cool thing I had. It seemed like every kid had something - a double jointed finger, an extra toe, oddly shaped mole - and this was mine. No one ever made a big deal of it and so I never really cared about covering it up with makeup and still don't. I don't know if I'd feel differently if it was more prominent on my face/neck.

The other thing I would add is that my vitiligo stopped growing/changing/spreading (I don't know the right word) once I was done with puberty. Before then a new "mole" might appear, or one might grow a little tail (my favourite one looks like a tadpole. Who needs tattoos!?). This all stopped with puberty, which correlates with the theory that vitiligo is influenced by hormones. So your daughter might experience some changes come puberty. This could be something to prepare her for from a young age, I think if she's ready she won't be upset by it.

The second thing is that I have experienced an increase in my vitiligo since I have become pregnant. In fact that was how I self diagnosed my first mmc - by 5 weeks of pregnancy my boob vitiligo decided to spread over my areola (which made it very easy to track it's progress as it was noticeable). It stopped very suddenly and I knew there was something wrong with the baby. I am now pregnant again, and by 17 weeks have no pigment left at all on my right breast. It seems to be very closely related to hormones for me, so that is again something your daughter might want to bear in mind in the future if she decides to have children.

Gosh that is quite a mammoth post! I guess the thing I'm trying to say is it's ok. It's not painful (unless you get sunburnt!). It doesn't itch, or bleed or look terrible. It's a bit different, but for me it was never life altering or damaging. I'd take it over other minor inconveniences any day. And it can even look pretty cool.

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