I got Vitiligo in my face almost overnight. Anyone else has it? How do you deal?

[Browser]

I noticed huge white spots in my face, and they didnt go away. I went to a doctor that gave me some beta-carotene pills, but they only masked it.
So I went to a vitiligo specialist and yep, its vitiligo. No cure and the spots I have will never truly go away. Doing some laser UV treatments and taking some corticoids to slow it down, but I have to deal with these now for the rest of my life. I am in my 30s.
Im one of the lucky ones I guess, they are located in a place where my beard covers 90% of it, even tho spots are appearing in my forehead as well.

Anyone else has this? Whats your experience like?

 

[Fliesen]

The thing about vitiligo is - it's LITERALLY just a difference pigmentation.
Like, there's nothing weird about it, let alone "gross". It's not contagious. No scarring, wetness, pustules, shedding, redness.
So i absolutely don't understand how anyone would make others feel uncomfortable for having it.

But alas, people can be super shitty, i guess?

Like, if you can only "slow it down" i'm not sure you wanna "waste" money on that. (Depending on the cost of these treatments and how uncomfortable you feel about it)

 

[Fart Master]

This can just happen overnight? I'm sorry OP I can't imagine dealing with such a drastic change out of the blue.

 

[Rotkehle]

my dad has this on his hands and chin. His beard looks cool. Make the best out of it.

 

[ItsBobbyDarin]

I have huge white spots on my stomach. They really get toned when I am getting a tan along with the summer. Just embrace them, your self-esteem will determine if they are ugly or beautiful. Even for others.

 

[Perzeval]

I got halo nevus which is related to vitiligo as I understand it. It completely erased every single mole on my body, it was pretty wild.

 

[Maximus Odinson]

I got halo nevus which is related to vitiligo as I understand it. It completely erased every single mole on my body, it was pretty wild.

Click to shrink...

Me too. Dermatologist like "It might go away on its own in due time." Nah dawg

 

[Scuttlefluff]

I got vitiligo all over my face when i was 14 (22 years ago). It enormously affected my self esteem and I got bullied a little in school because of it. I ended up using a kind of makeup every morning (Veil cover cream) and relied on it for years and years. I literally wouldn't go out without cover up. Eventually in my twenties I resolved my biggest problem - anxiety attacks, with proper medication and therapy. I then pretty much immediately stopped using the Veil and became oddly proud/content with my face as is. I guess the message here is that it's a much bigger deal mentally than anything else. I realise now that it looks absolutely fine. I hope this helps.

 

[spineduke]

In just one night? Are you sure you didn't notice before?

 

[Deleted member 1248]

I think it looks cooler the further it goes, especially when it's symmetrical, which seems to usually be the case. Maybe lean into it and save your money on the treatments.

 

[Terra Firma]

Vitiligo is usually associated with chronic autoimmune commodities.

 

[Huncho_Houdini]

Yeah It can appear very quickly. If you do want to slow it down you should stick to the corticosteroid treatment or other anti-immune creams consistently.

 

[Danielsan]

I also have it. I have some in my face (in my beard) and some small blots at the back of my head. It is what it is. I wish I didn't have it, but thankfully the affected areas are not that bad for me.

 

[Euphoria]

I d had a spot on my forehead above my left eye for years now. Not entirely noticeable until summer time, when my entire face tans except that spot.

 

[Whitemex]

I have some on my left arm. Also, after a trim I noticed my penis has it.

 

[lsayer]

Around my right eye, which I think looks pretty cool.
I also have some on the end of my foreskin, base of my penis and on my taint. Looks kind of like an STD but I'm married so I didn't need to worry about awkwardly explaining those to anyone.
I'm in my late 20's and it appeared a few years ago.

 

[Einchy]

I got it around when I was 21ish? It now essentially covers my entire face (some spots left on my temples and a little on my lower lip).

It was mostly fine there because I'm naturally light skinned, so my face and the rest of my body didn't stand out too much. In the past six months I've started to get some spots on my arms, those do bother me since they stand out more.

Honestly, though, you get used to it and it's common enough that I don't feel that self conscious about it.

 

[Volimar]

I've always found the markings to be really pretty, but I don't have to live with it so I can't tell you how you should feel about it. As someone who gets stared at a lot for often being in a wheelchair when I go out, the getting gawked at part can be really sucky, especially if you have social anxiety.

 

[RoboPlato]

Same thing happened to me in my mid-20s. Drives me nuts. Always looks like I'm drooling toothpaste or something since it's right on the side of my mouth. Unfortunately as I understand it there isn't anything you can do about it

 

[TitanicFall]

The thing about vitiligo is - it's LITERALLY just a difference pigmentation.
Like, there's nothing weird about it, let alone "gross". It's not contagious. No scarring, wetness, pustules, shedding, redness.
So i absolutely don't understand how anyone would make others feel uncomfortable for having it.

But alas, people can be super shitty, i guess?

Like, if you can only "slow it down" i'm not sure you wanna "waste" money on that. (Depending on the cost of these treatments and how uncomfortable you feel about it)

Click to shrink...

I mean it's a visible disease that most people don't know anything about. People discriminate based on appearance all the time. It's not like someone would tell you to your face that you weren't hired because of how you look.

OP, I have it too, since I was 12, but it was only localized to my neck area luckily. I was able to treat it with UV therapy. They have home kits you can get through approval with your dermatologist. They aren't cheap. Mine cost $1000 and insurance won't cover it. However after 3 months I saw a significant difference. I don't really need to use it anymore.

 

[WinniethePimp]

Eh, about 1% of the population has this, so yeah it's somewhat "common". I got it years ago and it's progressed quite a bit but i don't really mind honestly. It pales in comparison (pun intended lol) to other conditions and diseases so it's really not a big deal in a way once you know what it is. If you're white it's even easier to dismiss since it's obviously not as visible (unless you're super tanned of course)

Also, it IS associated with other autoimmune disorders (often thyroid related) but apparently not ALWAYS i guess since a bunch of people seem to ONLY have that (or maybe yet undiagnosed other disorders?).

 

[Einchy]

At work the other day there were 2 people, not including myself, with vitiligo. Shit was like a dalmation convention.

 

[CGriffiths86]

I've had it since I was a kid. Its on my elbows, knees, and top of my feet. Luckily, i'm pretty pale so the only noticeable spot is on my elbows. I have a small spot on my upper lip that makes my mustache a bit white in one spot. I never really think much about it, but I can understand that i'd be more worried about it if it was on my face or just appeared overnight.

Unfortunately, I also have psoriasis and seborrheic dermatitis so those usually take up most of my being annoyed at my skin time.

 

[Volimar]

I didn't realize it was so common. I encourage one of our members to make a thread about it. Like "Vitiligo 101" to help inform people and maybe share experiences and even pictures if you feel comfortable. The more people you get to know who have it, maybe the less self conscious you'll feel. Just a thought.

 

[Einchy]

Any of you guys have white hair because of it? In both eyebrows I have some white hairs, some strands in my hairline, beard and a big chunk on the hair on my neck. There's also a bunch around the entirety of my head but it's hard to notice them since it's only one or two.

 

[WinniethePimp]

Yes, my beard is pretty much all white/grey on my chin but then it's hard to know whether that's from Vitiligo or simply getting old as F lol

 

[TitanicFall]

Any of you guys have white hair because of it? In both eyebrows I have some white hairs, some strands in my hairline, beard and a big chunk on the hair on my neck. There's also a bunch around the entirety of my head but it's hard to notice them since it's only one or two.

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Well I'm in my late 30s so I just assumed it was old age and not vitiligo.

 

[Deleted member 43514]

I've had it since I was 8 years old. I'm 28z White kids were fucking cruel to me about it. Always called me "Dalmatian". But the amount of black and southeast Asian people with it astounds me and the repigmentation I've had astounds doctors. I' know a black girl personally who is literally 85% white at this point. I stopped caring years ago.

Women tend to like it :P but people ask me all the time "were you burned?" And I've educated quite a few people about it. Most recognize it if I call it Michael Jackson disease.

 

[Lcs]

Same thing happened to me a couple years ago. I hadn't even noticed it until my brother pointed them out.

All of a sudden I can finally see two big clear spots, one in my left cheek and one at the top of my forehead (which also led to a patch of gray hair). If I get any amount of sun exposure, they immediately pop out, since they don't tan like the surrounding skin.

I'm in my 30s and happily married so I mostly don't care, my wife actually finds the gray hair charming. Would be a whole different story if it had happened while I was young.

You should try checking if it isn't pityriasis alba just be sure, it looks a lot like vitiligo.

 

[Dice]

Randomly got some spots on my hand. I had no idea when it happened, I just noticed it one day.

 

[Biggersmaller]

36 here. I have very olive complexion while also having Vitiligo effecting noticable portions of my face, neck, and back of my head with white hair spots. A big difference being I've had it since being a toddler, which is rare.

In school, many kids were as cruel as they possibly could be. As an adult, I have learned to gradually cope with it. I was able to date, get married, have children, etc etc. People sure do ask questions (and assume I'm a burn victim), but most are relatively polite about my appearance.

OP, expect it to be annoying at first, but ultimately you will adjust and it won't impact your day-to-day life.

 

[Browser]

I really appreciate all the messages, thank you for the kind and encouraging words. I am still in the phase of I cant believe I am going to deal with this for the rest of my life, since they are large spots and I hate wearing a beard, but I will find a way to make my piece with it. And hey maybe my treatment will make it so much better It can help me get my mind off it.

Just adding more details from my experience, the doctor said my immune system is attacking the cells that fabricate melanoma, so the pills stop that process and the uv laser balances the color, because it kickstarts the melanoma creating process again. Nothing is certain as each person reacts differently, but I am hopeful it will make a difference. The laser gives me a bad reaction every time and the spots turn very red for about 5 days, so this is bothering me more than the whiteness for now I guess.

Oh and alot of you talked about white beards. The doc said wen the beards come off white as well as the skin, it means the cells will never produce melanoma again and that spot is basically gone for that. Mine is still coming out black, so I guess I started treatment at the right time.

I also have very small spots on my pits and one on my hand. My dad had it so I already told my siblings to get anything checked out.

 

[BAD]

I'm sure it's a shock to deal with but to me it's nothing wrong or ugly like people might have said back in the old days. Lots of models even have it now. Rock it OP.

 

[Danielsan]

Any of you guys have white hair because of it? In both eyebrows I have some white hairs, some strands in my hairline, beard and a big chunk on the hair on my neck. There's also a bunch around the entirety of my head but it's hard to notice them since it's only one or two.

Click to shrink...

Yes, I only have it in in places that grow hair. I have a fair chunk in by beard (on the right side of my chin) that is completely white. Then I also have some spots in my neck hair that are white.

 

[ElectricBlanketFire]

I started getting it on the tops of my hands and feet last year with new spots on my wrist this year. It's not as noticeable in the winter, but it really comes out in the summer after being outside for extended periods of time. I also have a spot on my chin. If I grow my beard out, it looks like there's a big glob of dried toothpaste on the corner of my mouth.

I'm self-conscience about it too OP. I've had a few people ask me if I had chemical burns. I know it's something I shouldn't be ashamed of and really it's not that bad, but I can't wait for winter so I can wear gloves.

 

[Deleted member 33515]

it's not ugly or whatever, but it's extremely inconvenient. it's too easy to get sunburned on areas with vitiligo and you have to use the highest factor for sunblock. if like me you love to go at the sea or bask in the sun, you're shit out of luck. also, just walking around on a sunny day can give you sunburn if you're not careful.

 

[GangWarily]

I've had it since I was a kid (I think I got sunburnt badly and had it all of a sudden?). Honestly nobody notices it :)

My brother had an interesting thing where he got vitiligo on his scalp so he had a patch of hair that has no color.

 

[Masterz1337]

Dumb question. Why can't you just get tattoo ink to fill it that is close to your natural skin color?

 

[AbstractPlain]

I have it on both of my hands. I try not to think about too much other wise it adds to my anxiety. It isn't dangerous or anything and I was recommended some camouflage cream to cover it by my doctor so all in all not too bad. Just another thing to add on top of everything else as I get older.

 

[Maligna]

I got halo nevus which is related to vitiligo as I understand it. It completely erased every single mole on my body, it was pretty wild.

Click to shrink...

I would love to have my moles erased.

 

[Kino]

Try rubbing turmeric on it. My sister had vitiligo when she was younger and my dad rubbed some fresh turmeric on it for a couple of weeks and it went away. Won't make any promises but it's worth a try.

 

[Perzeval]

Me too. Dermatologist like "It might go away on its own in due time." Nah dawg

Click to shrink...

My doctors didn't even understand what it was :/ Was it a long time ago for you and are you growing back any new moles yet?

I would love to have my moles erased.

Click to shrink...

They were replaced with white blobs though 😬 However, what I'm still amazed by is that I had a mole that was about 10 mm width x 3 mm height on my stomach and it was replaced with brand new smooth skin. Makes one wonder what kind of self healing the body might be capable of. 🤔

The white blobs doesn't stand out on me all that much though as I'm fair skinned but they're still noticeable, especially on my back. I have new moles growing back now and I'm curious to see if my body nopes them again in the future.

 

[Maligna]

My doctors didn't even understand what it was :/ Was it a long time ago for you and are you growing back any new moles yet?


They were replaced with white blobs though 😬 However, what I'm still amazed by is that I had a mole that was about 10 mm width x 3 mm height on my stomach and it was replaced with brand new smooth skin. Makes one wonder what kind of self healing the body might be capable of. 🤔

The white blobs doesn't stand out on me all that much though as I'm fair skinned but they're still noticeable, especially on my back. I have new moles growing back now and I'm curious to see if my body nopes them again in the future.

Click to shrink...

Whoa. Crazy!

 

[Maximus Odinson]

My doctors didn't even understand what it was :/ Was it a long time ago for you and are you growing back any new moles yet?

Click to shrink...

Started about a decade ago for me, I'm 28 now. Some moles are completely gone, others faded, another 25 % fully intact. It's kinda ugly but it's whatever at this point. I get a few quick stares at the beach but that's it so eh.

 

[Saoshyant]

I have had it show up in my upper lip more than 15 years ago just like that. I hate it because it kind of looks like the lip is always dirty with something (it's not!) and, while I'm still kind of self conscious about it, it's not like I can do much about it.

I've read somewhere that some people who have had the same issue tattoo the affected portion of their lips, but I've no idea how efficient or long lasting that procedure is. I should really look into it, I'd love if my upper lip looked somewhat more "normal".

 

[Browser]

Update on my treatment, i did 10 courses of laser in my face, hand and armpits, and most of the spots in my face are gone. My skin is responding really well to treatment, but it does not mean new spots wont appear, so I am taking corticoids to prevent that.

I was on the fence to do the lasers because the doctor gave me a very realistic expectation, which I appreciate, but its turning out really well. I recommend it.