I've only ever seen in person 2 other people with vitiligo, once when I was too shy to say anything and another while traveling in the states. They say that "About 0.5 to 1 percent of the world's population, or as many as 65 million people" have vitiligo. Even though that sounds like a lot it seems it's a rare occurrence to see other vitiligans.
So seeing another person with vitiligo should be celebrated, finally someone who understands! I feel like fellow vitiligans should have some sort of secret handshake or greeting that says you're not alone. But most of all I want to go up to that person and tell them they are beautiful. It may be awkward, but If a complete stranger told me that, I would cry. Where are you hiding you beautiful people, and next time you spot a spot give that person a friendly greeting!
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I was approached by a depigmented man when I was still spotted and at first, I thought he was going to say something rude as he kept staring at me. But he just wanted to let me know that both he and his grandaughter had vitiligo and were both depigmented and suggested that I look into it.
Now that I'm primarily depigmented, I don't feel I can quite approach another person with vitiligo because I'm not noticeably spotted. I wouldn't want others to feel uncomfortable with the situation.
Last summer I was in line at a festival and there were two other people in line with vitiligo.
Tracy and Jo, I love the business card idea, I think it's a casual way to give someone hope and a chance of talking with all us wonderful people about their condition. Even if they are defensive about it, I bet they would appreciate it and check us out. It's hard but you can usually tell how someone reacts that they don't want to talk about their vit, but if they don't you can just tell them good luck and I understand everything you're going through.
I finally approached someone while out shopping yesterday, she was the owner of the store and a very cheerful young lady. I thought by the white dots on her arms that she had vitiligo so I asked her about it. Turns out it's psoriasis, but not like you usually see, hers would disappear after a flareup but it would take the pigment with it when it healed. So it looked very much like vitiligo, but she said in the summer she could potentially get her pigment back. So we had a very good conversation about it, and I showed her my vitiligo and she had never heard of it. Since she was recently struck by her disorder she was happy to see someone else in a similar situation and could talk freely about it and not be judged.
I can really relate too what you are saying, because I live in Philadelphia,Pa. and there's about 1.5 Million people in my city and I see people with Vitiligo almost all the time, Usually when I approach somebody else with Vitiligo I ask them how long have they had it some people open up and talk freely about it because they know what you are going thru and then there's others who just want to be left alone
Steve Hargadon > Carl R. ManleyDecember 14, 2009 at 10:05am
Hey, Carl! So glad to hear from you. Hope you are doing well.
I was walking with some new friends along the beach and one of them had a lot of vit on her neck and arms and hands. Because I have just gotten it this year, I never really noticed it on people before, and she was actually the first person beside myself that I have ever seen with it, so I was quite excited. I just held out my arm and hands for her to see and said casually, "How long in your life have you had vitiligo?" and she answered casually, "Oh, forever I guess, since I was a kid." She told me the only time she ever wore makeup was for her wedding photos! I actually stopped wearing makeup after this. It was a very good experience. Granted she was nit a total stranger, because we were in a group of new and old friends on this beach walk, but I was happy that she was so open about it. She said she’d tried all the treatments in her teens and twenties, and now just accepted it.
Thanks for posting this discussion, I agree with your posting. I don't know how to approach someone regarding their vitiligo for fear of offending them or making them feel uncomfortable. Isn't that strange, I'm ready to tell the world yet hide it because I don't like being stared at. I guess a simple "hello" would work, right? I like your idea of a secret handshake or Steve's comment. I'm ready to learn some skills.
I've tried to take the same approach as Pat--I ALWAYS say something if I see someone with Vitiligo and we're in a position to talk. I do so by extending one of my hands with Vitiligo and I'll say, "I have Vitiligo. Is this what you have?" I think/hope it puts me in a position of humility or openness that is more likely to elicit a similar response. I've never had anyone unhappy that I asked about it, maybe just a couple where I could tell they were too awkward to want to talk any more, but with everyone else it starts an immediate and instant rapport and good conversation!
In the last 10 years I've met about 20 people with vit. I have always approached them and shook their hands and introduced myself.I met one nice gentleman from England who shook my hand first.It was awesome.He gave information right away and we spent about an hour talking about our cases.This guy was on holiday from England and he took the time to tell me things about diet,medication and several websites to visit.
Maybe its just me but I take a very direct approach to fellow vitiligans,let them know we have a common interest and share as much info as possible.I feel that life is too short and you can never have enough friends.
I have never talked to people with VIT - until I joined here !! Before that - I have seen 3 or 4 people with VIT - but I didn't know if it was appropriate to talk about it with them or not. Their VIT looked far more severe than mine - and at that time my VIT was all covered by my clothes !! So I didn't know how to start the conversation.
After VIT appeared on my fingers - there was this one time - where there was this guy who was seated next to me in the bus. He gave me a phone number of a doctor he said was good at treating VIT. ( I didn't see any VIT on this guy !!) I thanked him and he got down from the bus no sooner he gave me the phone number !! The doctor he mentioned was too far away from where I lived - and by then I had lost faith in doctors as well - so I never called him - but to this day I have that phone number with me !!
Replies
Now that I'm primarily depigmented, I don't feel I can quite approach another person with vitiligo because I'm not noticeably spotted. I wouldn't want others to feel uncomfortable with the situation.
Last summer I was in line at a festival and there were two other people in line with vitiligo.
I finally approached someone while out shopping yesterday, she was the owner of the store and a very cheerful young lady. I thought by the white dots on her arms that she had vitiligo so I asked her about it. Turns out it's psoriasis, but not like you usually see, hers would disappear after a flareup but it would take the pigment with it when it healed. So it looked very much like vitiligo, but she said in the summer she could potentially get her pigment back. So we had a very good conversation about it, and I showed her my vitiligo and she had never heard of it. Since she was recently struck by her disorder she was happy to see someone else in a similar situation and could talk freely about it and not be judged.
I can really relate too what you are saying, because I live in Philadelphia,Pa. and there's about 1.5 Million people in my city and I see people with Vitiligo almost all the time, Usually when I approach somebody else with Vitiligo I ask them how long have they had it some people open up and talk freely about it because they know what you are going thru and then there's others who just want to be left alone
Best Always,
Steve
Maybe its just me but I take a very direct approach to fellow vitiligans,let them know we have a common interest and share as much info as possible.I feel that life is too short and you can never have enough friends.
After VIT appeared on my fingers - there was this one time - where there was this guy who was seated next to me in the bus. He gave me a phone number of a doctor he said was good at treating VIT. ( I didn't see any VIT on this guy !!) I thanked him and he got down from the bus no sooner he gave me the phone number !! The doctor he mentioned was too far away from where I lived - and by then I had lost faith in doctors as well - so I never called him - but to this day I have that phone number with me !!
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