Are there others with Vitiligo on here? Have you tried light therapy? Anything else that has produced some regimenting? I’ve tried the steroid cream which was massively expensive and yielded no results. This “disease” is majorly negatively affecting my self-esteem. I am hopeful that the light therapy may work.
So far, this is my 3rd autoimmune disorder/disease (not sure what the correct term is) and I really hope it stops here…
Yep I have had it for years…it is a minor PITA compared to diabetes! Just don’t let those pale patches get sunburned, that is about the only treatment I give it. My father had vitiligo but not diabetes and his mother and sister had diabetes but not vitiligo (at least I don’t think they had it). Go figure! And hang in there, not much can be done for vitiligo except live with it.
I haven’t been diagnosed with Vitiligo, but I’ve some sort of pigmentation thing going on.
I’ve got pale patches on my cheeks and directly around my mouth, but the area between my cheeks and mouth (between the spot where my cheeks push out when I smile, or where a man would have a goatee) is darker. I can’t tell if the lighter skin is my ‘normal’ color, or if it’s the darker skin. I’ve also got a few small, pea-sized patches of lighter skin on my arms. It’s been like this for over a year, so it’s not a sunburn or tan and not scars, definitely some sort of pigmentation issue.
Most of the results in a Google search show Vitiligo examples on darker skin. I haven’t found many examples of early stages of Vitiligo on Caucasian skin and I haven’t been able to talk to anyone with the condition. Where did your color change start on your body?
Besides negatively affecting self-esteem (something I don’t experience with whatever my skin discoloration condition is), I don’t think there are many negative effects of Vitiligo. Is that right? I haven’t been treating it as something that urgently needs to be examined, but it would be good to know what’s going on and get a diagnosis.
I’ve got a referral from my GP, I just need to find a dermatologist that is accepting new patients.
My skin is quite light, and I try to avoid the sun. It started for me as a patch on my hip in my 20s. It stayed there alone for over a decade, then spread to my underarms, which is really hard to hide, even when I painstakingly apply self tanner with a brush. It’s always too orange or dark for my skin color. I had a boyfriend made a comment about “having to put up with looking at it” which destroyed me. I wish it didn’t, and I try to tell myself not to let it, but it completely made me scared to ever tell anyone again. It is now on my ankles in small spots, my elbows and upper legs. So, I basically never wear any clothing that is “feminine” which I would love to do, because I feel self conscious. I haven’t even told my best friends. It has stunted my adult life with relationships and it’s been emotionally devastating for me. I am probably in the best place I’ve been mentally about it, but it’s not great. I’m really hoping the light therapy might work for me, but it’s 3 months of appointments 3x per week, an hour drive away, and I haven’t figured out how that will work with my career.
I hope you either don’t have it, or if you do, you handle it better emotionally than I have. Counsellors/Psychologists haven’t been able to help me.
Sorry to be such a downer, but this has been my honest experience. I hope I find a way to accept things one day like so many people have been able to.
EDIT: in the summer only, I see it on my face in splotches on my cheeks, around one eye, and around my mouth. Also, spots on my hands. These don’t show at all in the non summer months, because I’m already so light. The face is quite easy to cover with a tiny bit of makeup. Eyebrow pencils work best, as the color is more ashy, less orange, and very light. The tiniest bit smudged on completely covers the face areas.
It is non-dangerous, other than it can make the sun burn you easier and that’s probably a skin cancer concern. I wear SPF clothing in summer, a big SPF hat and big shades. I do a lot of sports, so I wear cycling and paddling gloves.
Thanks for your honesty, @jo_jo.
These are the pea-sized spots I have on my arms. They come out more in certain light and aren’t easy to make out if you don’t know they’re there.
And this is the colour difference on my cheeks and around my mouth. Again, it shows more in certain light and it’s hard to get a photo showing it.
I’m not asking for a diagnosis and I know it could be many different things, but does any of this look similar to your Vitiligo?
The area on the face where the tan and light boarder looks similar to what I see on my face, but it’s hard to tell. The arms don’t really look like it to me, but I couldn’t say for sure. Even my own some areas have a very crisp line, where others are more a faded transition. Hopefully you’ll get to see a Dermatologist soon—they can be hard to get into!
Thanks.
The arms do look different, so maybe the discoloration is from something else.
I’ve got a triple-whammy to deal with for referrals -
I live in Germany and want to get a doctor that speaks English. That’s usually easy enough to find, but it does narrow my options.
I don’t have a car so need to get around by train. I can get to most towns by train, but again, it does limit my choices.
It’s always tough to get an appointment as a new patient.
There’s a dermatologist in my town that speaks English and is just a few minutes from my flat, so I thought it’d be really straightforward, but they weren’t accepting new patients when I asked a few months ago. Maybe I’ll try again.
It does not look similar to mine. I have it worst on my shins, forearms and back. Here is the loss of pigment on my forearm:
Thanks for the photo, @John58. That is certainly more extensive than the little dots I have on my arms.
I was diagnosed with T1D in August 2021 and noticed the lines on my face in July 2022, so it’s possible I noticed them early, or they’re something completely different.
I burn very easily and have done since childhood, so I wear SPF 50+ (Kids sensitive, because why not? It can’t be any worse the than adult and non-sensitive formula, right?). Hopefully that prevents it getting worse if it’s something else.
One day I’ll get around to finding a dermatologist and getting it sorted out.
My sister has vitiligo. White blotches, some kind of round, others more irregular; many are 1" to 3" in size; face, arms, legs. At first she tried to reverse or hide it. But over time she learned to accept it, and her friends don’t even see it anymore because they just see their friend. She says tigers have spots and she does too. Unusual doesn’t have to be bad, it can be interesting and cool, even flaunted. It’s all a matter of changing your own mind. I don’t mean to discount the initial pain and embarrassment, I’m just saying it doesn’t stay that way, depending on how you think about it.
I got vitiligo about 2-3 years before being diagnosed with Type 1. I was about 25 yo at the time and I’m now 72. It appeared in my scar tissue areas that I had accumulated from old bike accidents, burns, etc. I saw a dermatologist about 40 years ago, but nothing could be done about it. I have tried using coloring pencils, makeup, dyes to conceal these areas. The areas are rather small, thank goodness, and just old battle scars. I always cringe when I get a cut as I know it is going to turn white. It is hard not to be self-conscious about it especially if someone is staring at my knee caps or arms. I wear a lot of long sleeves these days.
Reviving this topic…because I’m starting to think about treatment for my vitiligo. So far I have found this write up of available treatments:
Vitiligo: Diagnosis and treatment (aad.org)
The one that intrigues me is the JAK Inhibitor:
" ** JAK inhibitor: This is a newer type of medication. Ruxolitinib (Opzelura™) is the only medication approved by the U.S. Food and Drug Administration (FDA) to restore lost skin color in people who have vitiligo…This JAK inhibitor is a cream that’s approved to treat people 12 years of age and older who have non-segmental vitiligo. It’s prescribed to treat a small area of the body.*"
Before I get started trying to find a dermatologist to look into this (and a new Medicare drug plan next year to cover the prescription), has anybody tried a treatment for Vitiligo and have they been successful?
I’ve had some repigmentation with light therapy. I’m waiting for Ruxoliibib to become available in Canada, then I will be taking that instead as per my Dermatologist’s instruction. If it isn’t working well enough on its own, he’ll have me on it in combination with light therapy. The only thing is if I can’t afford it, then I can’t take it. I’m waiting for it to be accessible before I submit a claim to my healthcare plan.
