If you are currently in a vitiligo trial:

A) which trial? B) for how long and how long left? C) any good progress on hands and feet, which you can maybe share pictures of before and after?

I’m Feeling so low and defeated, need to know there’s something in the horizon for me 😔

Has anyone tried transplanting cultured melanocytes? Where can I get it?

Can you guys please tell me some causes of vitiligo that you think of😭?

I feel a little embarrassed asking this. I'm 31 years old and I never got the HPV vaccine. Don't know why. Not going to dwell on it now but I'm back from my doctor and I was really disappointed. Going to have to find a new primary care doctor. It's going to take me some time because he doesn't know what he's talking about. Didn't even know what vitiligo was which was a red flag for me. Can I take the HPV vaccine in three doses even with my condition? I should probably wait for somebody but it's probably not going to be until March and April. I just wanted to know. I know the vaccine isn't going to kill me but I don't want to have any adverse side effects.

I know I'm not going to get professional medical advice here. Just asking a general question so I have some idea of where to navigate to. I might just go back to my dermatologist and get his opinion. He should have some insight on it.

I looked up that you can get the vaccine past 26 years of age but they don't recommend it 45 and older so I should still have time to get it

Here's a French language interview I found from the Cameroon show "Ô Café du Prime Weekend", originally aired 2023-06-24:

https://www.facebook.com/btmediaafrica/videos/o-cafe-prime-weekend/310112828011415/?t=5700

My French is a bit rusty but the interviewee was a great advocate for vitiligo acceptance.

So I'm working on my second book, and I'm thinking about giving one of the main characters vitiligo. Partly for story reasons (I want my character to realise throughout the book that individuality is nothing to be ashamed of, because at the start they belong to a tribe whose motto is "the tribe is more important than the individual", which was supposed to mean, like, don't be selfish, love everyone, all that jazz, but my character takes to mean that being different is... not great? Because stealing attention from others is Wrong and being different means getting attention. But by the end, their own personal motto is "the individuals are what makes a tribe", bc acceptance), partly for character interactions (main character 2 is a medic and fascinated by anything they've never seen before, and this makes main character 1(with the vitiligo) uncomfortable. MC2 has to learn kindness and not making others feel weird over the pursuit of knowledge, and MC1 learns self-acceptance and self-love), and partly just bc vitiligo deserves representation as much an any other group. It won't be a major part of the story, but it will be there.

I do not have vitiligo. I do not know anyone who has vitiligo. And I do not want to write a bad vitiligo representation and make people uncomfortable/do harm to the community with my non-vitiligo takes. So if this seems insensitive or anything, I'll just drop the vitiligo idea and find something else. However, if you guys think this is okay, I'll create my vitiligo character and check in with you for all important decisions/dialogue/story stuff so that I don't mess this up royally.

Please please pretty please let me know your thoughts!! Thank you!!!!

Hey, folks! I just discovered that there's a subreddit dedicated to vitiligo, so I wanted to join and integrate with my fellow spotted&patched people :)

Tho, I see that the majority of posts here are by people trying to "heal" their vitiligo and make it less visible. No judging. Everyone does with their body whatever they want. I just wanted to open up about my vitiligo :D

I was diagnosed at ~9 yo, after white spots appeared on my fingers, feet and knees. At first me and my family were terrified, but when we learned that it's auto-immune and non-fatal, we decided that it's nothing to worry about. And when I learned that Michael Jackson (probably my fav singer of all time) also suffered from vitiligo, I decided that I'll never treat it - rather embrace it as my special trait.

Skip forward 13 years to the present day, and I'm a patchy adult man :) I have vitiligo spots: under my eyes, around my mouth, on both armpits, both elbows, both hands from fingertips to wrists, genitals, right inner thigh, both knees & all over my feet (+my eyes lost some color, turning from saturated blue to very cold blue / almost grey) - and I'm proud of it ✨️

I'm caucasian, and naturally pale, so I guess many people with darker skin, on whom vitiligo is more visible, will accuse me of not knowing how it feels to have white spots on my skin - but trust me, it's still visible 😅 my hands look literally like they're bleached; one girl in middle-school once asked me whether I wear makeup, because she thought that I have a light concealer smeared under my eyes; and when my girlfriend (soon to be wife) saw my business for the first time, she jokingly said that it looks like a cow, due to the white spots 🤣

To conclude this lenghty post, I'm proud of my vitiligo. It feels amazing, knowing that I'm a part of about >1% of all humanity. It's really empowering, and helps me feel even more unique. I feel deep connection to all people with vitiligo, and all other forms of albinism. I love seeing people with albinism in media, I love seeing albinistic animals. It's just white, depigmented skin, but it means a lot to me 🤍🤎

I tried to get a good picture but my camera wouldn't focus right, but I'm finally getting vitiligo hairs in my moustache and beard!!!!!!!! Fuck yeah!!! Life time of living with this and I'm finally getting the good cosmetic benefits from it!!!!

Hey, I want to start nUVB (311nm) at home. I had no experience with light therapy before so I am looking for some suggestions from you all lovely people.

I have small spots on chin, nose, below my right eye. I also have it on some of my finger tips and few spots on arms.

• I want to know if I need apply sunscreen or something else before I expose my skin to the light?
• I realised that the handheld one is bigger that my spots so I read that’s it’s good to cover the unaffected area using cardboard/construction paper
• I also read from this sub that I shouldn’t apply opzelura before but later I can

I will do 3x a week and I will gradually increase the time starting from 30 seconds/1 minute.

Any tips and precautions I should know before using the light therapy is highly appreciated 🤗🥰

Thank you.

Hey guys, so we need to find a light that matches what they used in the study. They used the following.

Wavelength: Blue light (LED not Laser) 417+- 10nm

Fluency: 120J/cm2

Power Intensity: 60mW/cm2 +- 20%

Time: 9min treatments 2X per week for 10 weeks

I just read the study about the effects of blue light on vitiligo and figured I could give it a try.

article is there > https://pubmed.ncbi.nlm.nih.gov/36575871/

i already use opzelura and have a uvb narrowband light panel and so far results are quite good but I would be curious to try the blue light and was wondering if you had recommandations about the lamp I should buy.

internet is not exactly helpful today.

i have kept these 2 but I am suspicious . The first one is strangely cheap and the second one looks like a scam

https://hoogahealth.com/products/blue-light-therapy?srsltid=AfmBOoq7pzA7m7yHclr_0gb0iQ947vCAH3fXn40a0FVBXomFtRW0Ifay

https://dermalumae.com/pages/dermalumae-vitiligo-mask

thoughts ? Advices ? I am taking them all

I only had a small patch next to my mouth, but I had noticed it, along with noticed certain patches of my hair and beard starting to turn white all of the sudden over the last 2 years (I combed through pictures to find out). But he looked for a while, and basically said “yeah. Vitiligo sounds about right. It’s not very big though. Do you wanna do treatment? You probably don’t need it. Do you want it? No? Okay. We will just keep an eye on it and see where it is in a few months.”

The reason this is big news (bigger than normal I guess) is because I have been having major health issues the last 4 months which I think are attributed to a DIFFERENT autoimmune disorder. And now I have 2 that are diagnosed. So maybe they will take me seriously now.

So yeah. Just wanted to say hi!

Hi guys, for background:

Went to the dermatologist a few months ago for a rash issue, was told it might possibly be lichen sclerosus and got prescribed a mild topical steroid - it went away first application and never came back

Then i noticed a white splotch on the tip of my p_nis, (not the same area as the original issue i went in for) and about a month later at my followup the doctor shone a blacklight and the entire half of the p_nis lit up, so we think i have vitiligo (not lichen because i have no discomfort and the skin texture is normal).

So my question is, does Clobetasol make sense for this situation? I was taking weaker steroids when we thought it could have been something worse (like lichen). Pretty much everybody with lichen takes Clobetasol because it’s a strong steroid. However, since now the likelihood is that I have vitiligo, and it’s only one small patch on my genitals, why am I taking the strong steroid now? Do many people take Clob for vitiligo? Steroids kinda scare me lol

(I do plan to ask the dermatologist about it but it’s not easy to call and just ask a question, and the prescription I got is different than what I was told at the appt - so just looking for general insight here)

Thank you!

Hi guys, today was the first day of classes, and overall I had a good day. However, my professor made us do an exercise and then asked us if we noticed anything we hadn't before about one another. My partner shared that they had noticed I had a skin condition, vitiligo, which made me extremely uncomfortable and I almost cried. I'm not sure if they negatively made that comment but I wish they would've consulted with me before sharing that with the whole class, as it is something that has definitely lowered my self-esteem since it first started growing, while I'm not sure what intention my classmate made it in, I wanted to email my professor about how uncomfortable that comment made me as it is the first time in my four years of college something like this has happened, just in case my classmate ever makes someone else uncomfortable however I definitely don't want to get the student in trouble or anything, I just need to tell my prof how it made me feel. I would appreciate any insight as to whether this is something I should keep to myself in a diary or something I should email my prof about.

https://www.jidonline.org/article/S0022-202X(24)03043-4/fulltext

Have anyone used EarthDye to dye your vitiligo beard? Does it cause any reaction and is it good?

I am trying to camoflauge my skin under beard area but it looks weird because most of my beard is white. So, I am trying to look for options to dye my beard as well. Any vitiligo friendly options would be helpful. Thanks.

What are your thoughts on spray tan? To cover Vitiligo patches

Could it exacerbate the condition? Especially cos’ of the chemicals in it + the pressure on the skin when washing off the tan.

Thanks!

hey, m19 i’ve small white spotes around my stomach back and neck i’m wondering if the sun helps with repigmenting these spots, also i’m hairy and my body hair is dark so does that help?

Started treating my vitiligo with opzelura cream last week. When treating hands, are you supposed to try to not get the backs of hands wet when hand washing?? This is what I’ve been trying to do but it’s frustrating. Ya, the nighttime dose is fine, you can just apply before bed.
But what about after the morning dose? Do we assume once it’s dissolved into skin, you’re good to go and you can wash your whole hands or?? What do you guys do?

I feel inferior when it comes to approaching women because of my vitiligo. Although I have been in several relationships, I have never been open about my condition. Over time, they distanced themselves from me due to the lack of clarity about pursuing a more serious relationship, and eventually, they married other men. Now, I feel very insecure as my vitiligo continues to spread. I hope to meet women who also have vitiligo or who are willing to accept my condition, and I dream of building a relationship that leads to marriage.

Has anyone tried both?

Which worked better for you?

Has anyone used Opzelura on their neck and seen results? I’ve been using it for about 8 months, but I haven’t noticed much improvement.

Does using Whey protein be a reason for Vitiligo spread ? I happen to use whey and i did experience a spread for me, wanted to see if this has any connection! Whey happens to boost immunity and it is immunity that causes vitiligo, is it real ?

Hey everyone, I have vitiligo and I’m trying to be more mindful about the skincare products I use. I know that certain ingredients can irritate or worsen the condition, but I’m not sure which ones I should definitely avoid . Could anyone share their experience or knowledge about which types of skincare products or specific ingredients might not be safe or could cause irritation for people with vitiligo?