From https://www.instagram.com/vitiligovoicescanada/p/DCw9Idtyb2c/

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You're Invited to Our Final Vitiligo Voices Canada Meeting of 2024!
Topic: Open Discussion
This month, we’re keeping it open! Bring your thoughts, questions, and stories to share with the community. Whether it’s something on your mind, a personal experience, or just a desire to connect, we’d love to hear from you!
Everyone is welcome - whether you have vitiligo or are joining as a supportive family member, friend, or ally.
Let’s wrap up the year together with meaningful conversations and connection!
Date: Monday, December 2, 2024
Time:
- 3:30 PM PST
- 4:30 PM MST
- 6:30 PM EST
Please sign up on Eventbrite: https://www.eventbrite.com/e/vitiligo-voices-monthly-meetings-tickets-1094458377469

I’m curious if taking sarms affects vitiligo ?

Does anyone have a reliable source on the actual prevalence of vitiligo? In other words, how many people have vitiligo?

I know of the oft-stated figure of 1 in 150, but I don't know who and when first came up with this statistic, and how accurate it is.

Do you think "1 in 150" is an accurate number, or do you have the impression that vitiligo is rarer or, more common?

I've had vitiligo most of my life. For unrelated reasons, I'd like to start taking Ashwagandha, but apparently it triggers autoimmune diseases, so I fear it may worsen my vitiligo.

What has been your experience if you've been taking it?

i started developing vitiligo few months ago, i suspect due to being super stressed. i noticed it first on my penile shaft which is hard not to see and personally didn't get scared because honestly i don't think vitiligo is something bad.

after few weeks while i was shaving i saw that back of my testicles are fully white even tho i'm caucasian myself. those are only two locations i have it.

why does it always affect this area? every person i talked to has it on it's private area.

I am going to tell you my experience, whenever I had a cut or a scratch, I got vitiligo.

But when I went for surgery for something unrelated, they put me under anesthesia and cut my skin.

Surprisingly, I didn't get vitiligo there.

I think it was because I didn't feel pain, who knows?

Since half a year i have suddenly vitiligo in my ass (sorry). 😆 It's determined by a dermatologist. I'm now gonna check my copper / zinc levels.

Is there a link between low copper and vitiligo? I ate last time a little bit beef liver and felt so good afterwards. That give me the 'low copper thoughts'.

But im not gonna take a supplement on my own before i have some bloodresults back. I had taken zinc a few times this year and a iron supplement for 3 months (because i had low iron and anemia).

Anyone?

I’m working with my doctor on this but he doesn’t want to prescribe anything as I’m currently 13 weeks pregnant. Basically, I started seeing vitiligo patches crop up in my 20s and they never bothered me, they’ve just kind of been there. However, within the last couple years I’ve started to get these insanely itchy flare ups that would appear out of nowhere and seem to be triggered by nothing. We thought it was eczema at first but now the doctor thinks it’s related to the patches because the rash always shows up on the lighter bits of skin. I’ve had some success with heavy duty moisturizer and Benadryl cream but right now I’m at work and don’t have access to anything. My legs are INTENSELY itchy to the point where I cannot think straight, and I’ve had to excuse myself to the bathroom twice because I couldn’t help scratching and started bleeding. My legs look disgusting and scabby, I’m afraid to shave and I can’t wear dresses anymore. The itching also runs across my upper back, waistline and chest. Basically everywhere that there is a white patch, I am itching like mad. I have had poison ivy at multiple points in my life and this feels so much worse than that. I am only halfway through this shift, is there any hope for me or should I just try to look sick until my boss lets me go home? Also will dousing myself in Aveeno even help here or am I beyond that at this point? Please help I’m fucking miserable here.

i’m now so afraid because after using opzelura for about 3 months,my fingers got wild spreading,before using opzelura my fingers had been stable for 2 years , has anyone’s fingers got color back after using opzelura?????

Here's a poem I rediscovered when cleaning up my PC files. I originally posted it several months ago in r/Poems, albeit without mentioning that it was about vitiligo. I hope it can make some of you feel a little better.

Unusual but pretty as you were

There you were, so close to me

My eyes fell on you

I didn’t even realize.

But you certainly did.

I looked away, ashamed of my manners

My subconscious did it again

Please beg my pardon

I can’t help it, I’m just a man.

Your face, stained by the happenstances of existence

But still so utterly beautiful

Unusual but pretty as you were

It made my heart go weak

You were insecure about it, I saw it. 

Terrible, it must be

To get stared at.

But don’t worry, I didn’t mean no harm.

And if it comforts you, I’ve been there as well. 

Just a little something that I’d like you to know,

That adorable face of yours

It’s not a fault, people are at fault.

But don’t blame them, though

We’re all intrigued by something we aren’t used to

It’s human, really

And after all, I’m human too.

Any tips or suggestions on helping me accept my vitiligo? I cover it with makeup everyday and I’m tired of it. I want to move on and let myself be free.

I’d love to hear how you guys have accepted your vitiligo and your stories. Thank you!!

Why is it that i hate my vitiligo? I fucking hate it. It looks unusual. I love it on other people. All of your spots are cool. Mine isn't white white. Why does it get red ffs. It's on my forehead. I fucking hate it so much.

Hello, I am nineteen years old and my dermatologist prescribed Opzelura for spots on my elbows, hands, and around my eyes, but not on the eyelids. After a week of applying it to my spots, I noticed that my eyes were hurting. I wanted to know if anyone knew if it is normal and/or what to do in this situation.

Just spoke with my Dr. requested Opzelura for my vitiligo. He agreed, not 2 mins later called me back and said a red box warning came up for potentially very very serious side effects as this is an extremely strong immune suppressant. Highly recommended that I don’t try this. I was reluctant but agreed not to try it. Anyone else have experience with this?

Is there a real danger if I illuminate the perineum and pubis with UVB light? (I would not illuminate the genitals)

will this trigger vitiligo or make it worse? Having it sucks but then like you can’t do anything to improve your skin bc it triggers it….so very annoying!! Anyone try micro needling and if so what was the outcome ? Thanks everyone and Happy Sunday!

Anyone tried it? Also anyone have any at home UV treatments? My insurance won’t approve it

Hello everyone ,

Do you think spray tanning can cause vitiligo or cause it to spread more if you already have it???

I’ve had vitiligo for the past 11 years now. It affected me the most when I was a kid, I was made fun of for it.

I’m 22 now, I don’t let it bother me anymore really. But I do still want to look for a permanent solution for vitiligo everywhere, especially my eyelashes. I have a few parts of my hair white, chest hair white, eyelashes white. I tint my eyelashes when going out in public and it does the trick but it’s temporary. I want to wake up and have black eyelashes again.

Is there anything permanent solution I could do? Or is there anything that could regain pigmentation again in my eyelashes? Everywhere else too of course. It bothers me too because I want to get married one day and not have to show my wife my white eyelashes, and acknowledge the fact that our children may possibly inherit it and may have it worse too.

I was prescribed Opzelura by my dermatologist for vitiligo. My insurance company is denying to pay for it since they think vitiligo is a “cosmetic problem” therefore it’s not medically necessary to cover its treatment. I have no ways of paying the full price for this drug and I need help understanding the patient assistance programs. Have you tried it and if so, will you be able to tell me the route you followed?

Hey group,

Been following for a bit and first time poster. Had a few spots show up on extremities 2.5 years ago, and has since been expanding (especially in arm pits, and now a spot next to my eye)

I have received the following medications and wondering what others have thought of using the same:

Protopic .1% - I tried this for about 4 months a year back and didn't notice any changes. I have just been told to try it again on a 2 week rotation with the following steroids.

Clobetate .05% - Steroid used near my eye

Elmoet - Steroid for my body, really only using it on places not covered by clothes (hands/arms/chin). I am male and have larger spots under my chin on my bearded area (trimmed weekly). This did cause my beard are to break out quite badly.

Dexasone 4mg - Told to take 2 times a week, I guess to help reduce the vitiligo from spreading.

Started a month ago, and know it is quite early, but interested to hear if people have had good results or any side effects using this time of treatment.

Thanks!
*Also to add I have hypothyroidism.

I have a Philips UVB lamp at my disposal, but the problem is that I understand that "the eyelids must be illuminated with protective goggles".

Hi, has anyone tried this technique? I first saw it on a Brazilian doctor's Instagram, and it seems very simple and effective. It's a punch, and for smaller areas it seems interesting, but I can't find anyone who does it in my country (Spain).

I’ve been using Opzelura for a little over a month twice a day. I apply it using my left index finger and I have been wiping my finger off after application, but not washing my hands. Over the last couple of weeks my finger joint has stiffened and felt painful, like arthritis. Has anybody else experienced this?

I just ordered some finger protectors to apply it without touching my finger. Hopefully it resolves the pain.

So I'm white 16m with pretty Visible white patch on my jaw and neck and I never got into a relationship so I wandered if my vitiligo has anything to do with it