When I was a kid. I used to remember seeing older people with vitiligo and I used to look and stare because it was strange and unusual too me, But now that I'm an adult with Vitiligo myself. I understand why the older people never tried to cover it up they have gotten used to it over the years and now that I'm 46 and approaching middle age myself I can fully understand what they have been thru and why they refuse to use treatments, medicines, cover cremes and concealers or other things to try and repigment, life is short so I'm going to live it out the way that I am not the way that I first was when I came into this world. yes vitiligo is unfair but so is life and you have to deal with it the best way you can
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Hi I have just joined and can already see that the people on here are going to be a great source of strength and inspiration to me. I have had vit for 37 years since I was 10. I am a white woman. I am sorry to say that I have never accepted it, I still cover up or dont go out on hot days. I wont even wear a tee-shirt when I am with my partner (its not my partner its ME that wont accept it) and I have never been naked in front of anyone - ever! I have about 65% all over everywhere including face and all hair areas!! I made a decision quite young not to have children as I could not bear the possibility of passing it on to someone and have them live like me (I dont feel like this towards those of you who have and admire and respect your decisions). For any parents with children with vit - dont ignore it like my parents did (they just did not know what to do and I can understand this) but I think if you have a family you feel accepts you and loves you it makes a good start for facing the future and gives you strength to 'go public'. I have decided that I want to depigment, I hope that when I go to the Doctors they will support me in this but if not I may try buying over the net so any of you with any information on this please let me know. I know there are problems with repigmentation but it cant be any worse than now. Thank you all on here for being so honest and sharing your expereinces...I am going to make a start by wearing a teeshirt in front of my partner!! What I would love is to get to the stage when I can go swimming again which I miss very much. I hope the dermos are a little better these days when talking to kids with vit - mine said "Well cows have it I am just surprised more humans dont!" This did nothing for my confidence as a 10 year old!!
I agree with your comment........ some days I can stand up against the world and other days I don't really care to leave the house because at home, I am at peace. (Me too Courtney I feel you on that)
I have had this for 30 years and I am only 32 AND still not use too it. Wish I develop this as I got older and not such a young age. I still do not accept it or have adjusted to it!
Hi Lisa. I know what you mean. I'm definitely not used to it or "ok" with it. Just like wishing to hit the lottery, I'm wishing for the day they find the magic cure, although it's far fetched as of now.
I guess I've just gotten better at not caring about other people's thoughts. It will probably get worse for me when my face is more affected. So I know what you mean 100%.
Don't worry about the face. The face is the easiest to treat about 12 years ago my face was probably about 80% covered with vitiligo and now I only have a small amount by my mouth.
Lisa:
That's really great to hear ! Congratulations for the success. Hopefully, your success continues.
For myself and benefit of others, could you pl share the details about the treament, such as what medicine. how long it took. Very interested to hear. Per our derm, established vitiligo is very difficult to treat. That's why your note is nice music to our ears. We achieved good success so far for my daughter just with Protopic and mild steroid over the past 2.5 years. We are now, dealing with ears, and the foot area (toes, fingers etc.). Not having luck at all.....Just being patient simply and hoping for the best. I can tell that in ears, the rate of severe outburst/progression somewhat controlled. Thanks in advance.
Will remember the Narroband usage for facial vitiligo, if we ever need for my daughter. During our next trip to Derm, we will try to learn from the Derm reg. narrowband. Because, if protopic cannot do the magic in ears, obviously, we have to switch to some other treatment.
I hear ya, Carl! In a way, I feel like those of us who have had vitiligo for a long time are a great resource for information and emotional support, but I see it from the other perspective- either we developed vitiligo at a young enough age that we had time to adjust and/or we've just had it so long that it's now part of our every day lives.
I truly pity the newly diagnosed. It's been so long that I shudder to imagine what it would be like to be a teenager or older and be diagnosed with this. I've had 18 years to adjust, and was just a kid when I was diagnosed. I have to tell you, you couldn't pay me a million dollars to re-live my "adjustment phase" that coincided with puberty. It was pure hell, and my heart aches just remembering it. I don't think I had ever felt, and hope to God that I never feel again, as lonely and desperate as I did then.
Ali, your post spoke to me on so many levels. But the entire first paragraph is flawed.
I have had vitiligo for 15 years. I first noticed it when i was 7, im now nearly 23 and i suppose i'm still adjusting. Vitiligo in my case has spread very slow. So slow in fact, if it continues at this rate ill have a large amount of spots combined with a large amount of pigmentation. I don't need to explain to you what that means, but in a word: stares.
People stare at my hands, they're very unique, and mutually dissimilar. i'd imagine that in time, the same will be able to be said about the left and right side of my face. That's terrifying.
The loneliness and desperation you have mentioned is what i fealt in mass quantities last summer. This summer i get a hint of it here and there, and i thank the universe every single day for my tight knit circle of boys and girls who love me no matter what. Without them i'd be down in a hole. No matter how long i've had/will have vitiligo.
Replies
I agree with your comment........ some days I can stand up against the world and other days I don't really care to leave the house because at home, I am at peace. (Me too Courtney I feel you on that)
I guess I've just gotten better at not caring about other people's thoughts. It will probably get worse for me when my face is more affected. So I know what you mean 100%.
That's really great to hear ! Congratulations for the success. Hopefully, your success continues.
For myself and benefit of others, could you pl share the details about the treament, such as what medicine. how long it took. Very interested to hear. Per our derm, established vitiligo is very difficult to treat. That's why your note is nice music to our ears. We achieved good success so far for my daughter just with Protopic and mild steroid over the past 2.5 years. We are now, dealing with ears, and the foot area (toes, fingers etc.). Not having luck at all.....Just being patient simply and hoping for the best. I can tell that in ears, the rate of severe outburst/progression somewhat controlled. Thanks in advance.
Thanks a bunch for your reply.
Will remember the Narroband usage for facial vitiligo, if we ever need for my daughter. During our next trip to Derm, we will try to learn from the Derm reg. narrowband. Because, if protopic cannot do the magic in ears, obviously, we have to switch to some other treatment.
I truly pity the newly diagnosed. It's been so long that I shudder to imagine what it would be like to be a teenager or older and be diagnosed with this. I've had 18 years to adjust, and was just a kid when I was diagnosed. I have to tell you, you couldn't pay me a million dollars to re-live my "adjustment phase" that coincided with puberty. It was pure hell, and my heart aches just remembering it. I don't think I had ever felt, and hope to God that I never feel again, as lonely and desperate as I did then.
I have had vitiligo for 15 years. I first noticed it when i was 7, im now nearly 23 and i suppose i'm still adjusting. Vitiligo in my case has spread very slow. So slow in fact, if it continues at this rate ill have a large amount of spots combined with a large amount of pigmentation. I don't need to explain to you what that means, but in a word: stares.
People stare at my hands, they're very unique, and mutually dissimilar. i'd imagine that in time, the same will be able to be said about the left and right side of my face. That's terrifying.
The loneliness and desperation you have mentioned is what i fealt in mass quantities last summer. This summer i get a hint of it here and there, and i thank the universe every single day for my tight knit circle of boys and girls who love me no matter what. Without them i'd be down in a hole. No matter how long i've had/will have vitiligo.
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