Hi,
I am new here and just recently found out I have vitiligo. As you can imagine this is difficult news although I'm really trying not to let this affect me personally. My husband is amazing but since I'm not dealing with this that well we both agreed I need to seek professional help. I am interested in hearing your stories. I see a lot of positive people on here and I hope I can get to where you are soon :)
I want to find a dermatologist that knows more about vitiligo than the one I visited. I live in the San Fernando Valley.
Replies
Thanks for reaching out. I was diagnosed 4 months ago and the vitiligo is spreading very quickly. I also developed alopecia areata around the same time and it has taken some getting used to. My vitiligo is not on my face yet and I am doing UVB treatments 3x per week as well as topical cortisone. My main concern is that it will spread over my entire body. My father has vitiligo over his entire body and hair. He looks albino, but he has brown eyes and white hair (people with albinism tend to have a yellowish tint to their hair). Vitiligo on my body doesn't bother me so much anymore. It makes me look unique and I think it looks pretty in some areas. I feel like a calico kitty amongst a see of brown and white cats. Odd comparison, but it works for me :). I do worry about it being on my face in an odd pattern, but I am not there yet. I am interested how you are doing with it now. Acceptance has helped me. I am doing everything I can to take care of myself and my conditions and the rest isn't up to me. Let me know how you are.
Hi there. I empathize with how you are feeling. I'm sort of in the same position. But I've had Vitiligo for more than 15 years. My boyfriend is extremely supportive and has no problem with my vitiligo. I often have a more difficult time accepting it than he does.
I've tried several treatments
1) Narrow UVB
2) Microskin
3) Tattoing
All are great solutions, time consuming, and expensive. They may be worth checking out.
I have my ups and downs. When i'm busy with other things in my life I spend less time worrying about how I look. When I'm not that busy it gives me time to worry and become more self conscious. Right now I'm worried :( and need someone to talk to as well. So i hear you. You have a supportive husband, talk to him about how you feel and talk to a professional on how to deal with this. Its not going to go away but we can try to work on our perspective on ourselves.
Thanks for all the responses! I am doing a lot better dealing with this. I did seek out professional help and the therapist has been great. I did see another dermatologist, one referred to me by my therapist. The dermatologist was very honest and didnt' treat me like the previous dermatologist who reacted to me like he was giving me a death sentence. That will teach me to see a dermatologist in Beverly Hills, where I guess something like this is like death!
It was a rough month and I'm sure with every new spot I will cry a little but with the support of my family I know I can see the beauty this is teaching me. I have always taught my daughter, who is half hispanic and half white to love herself and our differences, this is no different. I just figured it would be easier as an adult :)
Hello, I’m glad you have support from your husband because many years ago, I know having vitiligo caused problems in my relationship because I lost self confidence in my appearance. It’s been many years now and I’m feeling great about life with vitiligo. I sought out professional help and have a wonderful derma group at Kaiser Permeate. They covered all my treatments and meds without hesitation, I still had to pay co-pays and the cost of meds but I’m glad I have them as my health provider. Try not to worry too much about your vitiligo because you are still you and stress will make it even worse. You are a very special person just like the rest of us, so embrace yourself no matter what! A few of us are meeting in Long Beach Ca, at the Yard House on April 30th, it would be great to meet you and your husband as we support each other, share our stories and exchange numbers.
Kathleen, I’m sorry but I think it’s your dermatologist. Some don’t know enough about vitiligo to discuss it with you and can tell you on one hand how many vitiligo patients they have. In my book, any doctor who tells anyone that vitiligo is purely cosmetic clearly doesn’t know what they are talking about. As we all know; vitiligo is a lot more than “cosmetic” Vitiligo is sometimes associated with more serious disorders, auto-immune, genetic and environmental factors. My doctors discussed what they knew about vitiligo with me and the treatments they offered. I asked if they had some vitiligo treatment success stories and they didn’t, that was a bit discouraging but they said the treatment is 6 months to a year and most people don’t stick around long enough to get positive results. They knew that I was serious when I told them that I would be their first to stick around. I stayed in treatment and now they have a success story with weekly photos of improvement to show others. I have been out of treatment for 2 months now and loosing the new re-pigmented color daily. That was one of the downfalls of the treatment. I’m glad I did it and had my doctors by my side all the way. I might start Laser treatment next week with Kaiser. You might have better luck if you request another Kaiser dermatologist.
Hello A.
I live in the San Fernando Valley too ! I have segmental Vitiligo so it is only one one side. I can give you info on a derm that has the Xtrac Excimer laser. My insurance company approved 30 visits, I have Blue Cross/Blue Shield. Let me know if you want to talk on the phone or meet for a cup of coffee.
Theresa
Hi I live in san diego el cajon its tough the first years coping with something like this but you must try to stay positive about it, there's manny solution like make up, treatments for regaining pigment if nothing work you still have the solution to go Depigment all your body and face to just one color, so you have choices everyone here respond different to treatments, so you must try to treat first and use coverups if that will bring your confident level up, if the treatments doesn't work you still have the depigmentation choice left.
If you need someone to talk let me know Ill send you my number.
Ms. Rice,
You are going to find that dermatologist have very little to offer vitiligo patients. Since our condition does not cause physical pain, it gets no attention in the medical world. Your best bet is to continue to do research online, and learn as much as you can about the condition.
In my opinion, stress is the biggest factor in causing Vitiligo to spread. So, whatever you do, try to relax and remain as stress free as possible.
Best of luck, and welcome to the group.