Vitiligo - looking for advice and hand-holding

[SpottyAndDotty]

Hi. Have name-changed because I want to keep this separate from my other MN ramblings.

I have had vitiligo for a while but it hasn't much bothered me as it's on places that aren't very conspicuous. Now, though, I've got a patch developing on my face. I use sunscreen moisturiser and the patch will disappear if I use make-up on top, but I'm in two minds about it. Part of me thinks this is part of me and although I should protect with sunscreen I shouldn't hide.

What do other people do?

Having had vitiligo since birth and now it is really quite advanced I am full of sympathy. Currently I am in a phase of progression and the patches around my eyes are growing and my eyebrows are now turning white. I use a sun block on my face at all times so my entire face is very pale making it all less obvious. Unfortunately vitiligo is the tip of my auto-immune iceberg and I am no longer able to wear any kind of make on my face so I have got used to it.
I have large patches on my arms, legs and torso. I now use very high factor sunscreen to prevent a natural tan and then in the summer I use the Dove tinted moisturiser on my legs and arms which tints even the areas with vitiligo.

The area I find worst is my hands and this is accentuated by having to use UV light on occasions at work then the patches of vitiligo on my hands look awful then.

Sorry to hijack the thread. My daughter has developed what I'm assuming is vitiligo in the last year or two. It is only noticable in the summer when she tans. She has a lot of patches on her legs, and some on her hands.

Will it spread elsewhere, her face for example? Will it get better or worse on it's own? Is there anything I should be doing? Will her problems only be aesthetic, or are there other complications I should be aware of?

I should take her to the doctor, shouldn't I?

If it is vitiligo (I would get a doctor to check) it will never get better. It may or may not get worse, mine stayed the same till I was pregnant. Unfortunately for me pregnancy completely screwed my immune system and it got much worse along with other problems developing.
The patches of vitiligo have no pigment in them so you are much more prone to skin cancer in these areas so it is very important that high factor suncream is used on the areas.

Thank you for being so frank.

I hadn't thought about the Dove - I wouldn't have expected it to cover the difference in skin tones.

My hands are quite badly affected - there's almost no pigment left on my fingers - but nobody seems ever to have noticed or commented. It did occur to me I could wear fingerless lace gloves (a la Madonna in the 80s) if I wanted to disguise the difference in pigmentation.

I guess what I'm wrestling with is how much I want to cover up, not from the point of view of protecting the skin but because people might gawp or comment. Part of me thinks 'so what' but I also remember that every time we saw her, my aunt (who was not a tactful person) would say something to my mother (who also has it) about her patches and it did get very wearing for her.

Lizcat, can I ask you what effect UV has on vitiligo patches, is it burns?

Quinn, from my reads, vitiligo can be linked to gluten sensitivity or coeliac and often coexist with dermatitis herpetiformis (another condition linked to gluten) and there is even a paper on its reversal here

Lizcat - What checks could/should a doctor do? An acquaintance of mine told me that I hadn't got vitiligo because my pattern of pigment loss wasn't the same as hers, but my GP just said that loss of pigmentation = vitiligo.

Vitiligo patches will burn dramatically and it is the action of burning that can trigger the uncontrolled division of the skin cells that is cancer.
Vitiligo can be linked to many things as it is due to have a doggy immune system, so peoples immune system only bothers with melanin, mine has taken a fancy to melanin and all types of connective tissue, other peoples go after gluten. I think the most important thing in that paper is that vitiligo is wide associated with other autoimmune diseases.
I had a temporary gluten intolerance for 6 months (too many antibiotics mad the immune system even more screwy than normal) and I did exclude all gluten and did not have any improvement at that point.

thanks Lizcat

Yes, our consultant did say that if autoimmune damage due to gluten is severe, it cannot be reversed.

Thanks for your replies, interesting thread!

She does not appear to have any other problems currently, although she has always been slightly more sensitive than my other children ( Cows milk intolerance as a baby, eczema, recurring constipation problems ).

I am very aware of immune problems, having never fully recovered from Glandular Fever four years ago. I will get her to a Doctor.

Can I just ask, do you wear sunscreen all year, or just Summer?

Also what sunscreen do you use?

My dh has vitiligo, and works outside so I am always nagging him to cover up, use sunscreen etc. I just wanted to make sure we are being as vigilant as we can.

I hadn't heard about the gluten/immune thing, interesting because dh developed a really bad reaction to wheat a few years ago.