AIBU to be massively depressed over a potential diagnosis of vitiligo?

(13 Posts)
IsThisEmette Thu 21-Jul-16 12:17:23

I'm looking for some positive stories on vitiligo.

About a year ago, I developed these white patches on and around my eyelids. I also had a couple stray white hairs around the eyebrows.

I had them checked by a GP who couldn't quite work out what they were but then said it was the initial stages of vitiligo.

I was given this ointment to put on the patches (something that's usually used for eczema but has been shown to sometimes help vitiligo)

I've used it for 6 months and nothing has happened.

So I've finally managed to get referred to a dermatologist via the private insurance I have through work.

The private GP is quite convinced that it's vitiligo and has told me that there isn't an awful lot they can do about it.

Is it actually as dire and dismal as she has projected? Is there really no cure or no way to make the skin look a bit more normal?

My aunt had vitiligo, (she lives in France though) and hers was literally completely cured within 6 months with different therapies.

I guess I need a morale booster at this point.

The patches haven't spread at all in the past 18 months that I've had them. In fact on one side they have reduced considerably.

But every GP I asked has been very very negative and has said that vitiligo isn't really curable.

Any positive stories? Anyone who was able have a positive response to treatment?

MatildaTheCat Thu 21-Jul-16 12:26:31

Sorry to hear this. If you've seen a private dermatologist and they are clear in the diagnosis and can't offer treatment I guess it's a question of managing the condition? I know nothing about it but does sun protection help stop it spreading? I'm sure there will be online support groups, Facebook has private groups for many conditions so worth checking.

My neice, aged 9 has lost the pigment around her mouth and because she is quite dark skinned it was quite noticeable but seems less so over time.However, it hasn't spread in the last 3 years and makeup is a marvellous thing.

IsThisEmette Thu 21-Jul-16 12:30:21

I haven't seen a private dermatologist yet- but the initial diagnosis of the GP has been that it's vitiligo and in general they insist there isn't a cure.

I'm hoping some people who had the condition and were able to either get pigment back in the areas or stop it spreading can share their stories

Lonecatwithkitten Thu 21-Jul-16 12:34:10

I have had Vitelligo since I was born. If you have true Vitelligo it is an immune mediated condition which destroys your melanin in your skin.
It is progressive, but often progresses at times of stress. Around 40% of my body has Vitelligo now including patches causing my hair to be white (not grey), eyebrows, eyelashes and around the eyes.
I have me hair, eyelashes and eyebrows dyed. Where sunblock all the time so I never tan and wear good quality foundation most of the time so mine is rarely noticeable.
I maybe less bothered about the Vitelligo as I have other more serious immune mediated conditions that cause chronic pain and may shorten my life. So I see this as the least bad one.

IsThisEmette Thu 21-Jul-16 12:40:01

LoneCat-

I am so sorry to hear that. I hope you are under the care of a good team and I really hope you'll be in good health soon.

My patches are quite small but I find that foundation doesn't cover then entirely. Have you ever tried camouflage? I've heard it lasts 3-4 days and looks like skin.

I've also heard that some people may actually get pigmentation as a result of chemicals in makeup.

So I'm not really sure what to believe

VioletBam Thu 21-Jul-16 12:44:12

flowers I have a (different) skin condition which developed in my late 30s. It IS devastating. I had perfect skin for years...so having to face this is awful.

I must tell you though that learning how to apply makeup will help you cope.

The Red Cross in the UK run courses on applying camoflage makup and you will be eligible for very good makeup which the National Health can provide and which is amazing.

My condition isn't quite as coverable as Vitilgo is but I manage quite well...I think you should enquire about the Red Cross course...and the prescription makeup.

Also watch Youtube. There are amazing tutorials on how to cover up Vitiligo and other skin issues....ALSO ask your Aunt which therapies she had.

Meemolly Thu 21-Jul-16 12:47:16

I have no experience of Vitiligo either, but I just wanted to say that you are in no way unreasonable for feeling depressed. I have had psoriasis for 30 years and at times it has been on my face and I can completely relate to the feeling of a lack of control that I think I read in your post. I hope that you can find something to help, I agree talking to your Aunt sounds like a good idea. Good luck.

VioletBam Thu 21-Jul-16 12:47:49

I use Kryolan concealor pallettes...because I'm in Oz now and can't get prescription makeup here so easily. It's AMAZING and you can get in easily online in the UK. I also advise getting some half decent brushes and using a good primer.

I am well practiced now and you'd never know I wear makeup daily.

IsThisEmette Thu 21-Jul-16 13:03:23

I've actual worn makeup daily all my life because earlier I had acne and redness.

Now that my skin is normal apart from the small white patches, I have been looking forward to going makeup free.

It takes so much time and it's so many chemicals on the skin. I feel tied down by the idea of having to wear makeup everyday.

If I don't have another choice, I'll do it.

I can't speak to my aunt because unfortunately we are estranged.

But I'm assuming it must have been one of the available treatments that she had- light therapy or ointments wtc.

Was hoping someone else on here had experienced betterment from the existing treatments. It looks like my aunt was just a very lucky one off sad

VioletBam Thu 21-Jul-16 16:48:25

www.telegraph.co.uk/news/science/science-news/11696304/Has-Yale-University-finally-found-a-cure-for-vitiligo.html

There's this...seems hopeful.

IsThisEmette Thu 21-Jul-16 17:37:54

Yes! I read that.

I will ask the dermatologist I am meeting about it

I've also read that with very small patches of vitiligo, the pigmentation often returns on it's own.

And that there's a fungal infection that can cause EXACTLY the same appearance as vitiligo.

So let's see. I am hoping he'll have good news

Layla17 Tue 23-Aug-16 15:59:10

Just seen this thread.
I am in a similar position to you; have started to develop patches recently. GP was very matter of fact, and sent me away saying nothing could be done. It is really affecting my confidence.
How did you get on with the dermatologist? Any good news?

StrattersHasACunningPlan Tue 23-Aug-16 16:06:54

DD1 has vitiligo, it hasn't stopped her from modelling v successfully whilst at uni. She has no pigment on her eyelids, and blotches on her body, she just uses fake tan to cover.

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