I started this network because I have vitiligo. My vitiligo is very moderate, and I am light-skinned, so may not be too noticeable. But I've always wanted some more immediate forum for those with vitiligo to talk with each other.
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Hola amigos, comparto con uds. Mi experiencia. Creo que el sol fue ocasionando algunas manchas tenues en mi piel, me aplico Avitil, me alimento de verduras verdes por lo general, pimienta negra, entre otros. No debemos ser tan trágicos al enfrentar problemas, aprender a manejar la parte emotiva ayudará a mejorar. Practicar Yoga es vital. Cuídense!
Probably not the best time to look for research of a disease that is cosmetic at this time. Not that I don't relate had pretty noticeable vitiligo for more than 25 years now brought on by a deep burn in my right hand, then it galloped.
During 10 years had vitiligo controled and reduced to a minimum. the treatment was with creams prepared by a Dermatologist. he never share the formulation, unfortunately he passed away and after 4 years the conditions has returned to my body. This happen after 20 year of being in total control.
i have a bit of the product and would like to somebody analyze it.
contact me if you are researcher and have the equipments required
Hey, this is my first post. I just signed up... can’t believe it took me so long to come across this website. I developed vitiligo about 4 years ago, and it’s been spreading since. I am currently trying light therapy and tofacitinib, which is a JAK inhibitor. It’s been a few weeks, but there aren’t any visible changes yet. In any case, thanks for starting this network!
Joy Banerjee, I am interested to know how the Tofacitinib is working for you? I have heard so much about this. Are you in the trial with a Dermatologist?
Hi Steve, just came back to vitiligo friends after few years absence. Got worse all over face and elbows. Will update photo soon. Hope to learn more and maybe chat.
My grandma, uncle, and mom all have vitiligo and they also all have Hashimotos. I just started to notice a couple spots on my chest and neck and i'm 17 I didn't think much of it until my mom saw one of my spots and said I have to come to her next appointment. I'm almost positive it is vitiligo since my family history and I also have Hashimtos. I curious to see how fast it spreads. My mom didn't get vitiligo until her 30s, so I didn't think I would get it yet. My family that has vitiligo has fairer skin compared to my Italian skin I got from my dad. I don't plan to cover up the vitiligo or treat it. I don't currently wear any makeup and don't plan on anytime soon. I wish I knew how it was going to spread. I think we need to educate more about the disease then change ourselves so people accept people like us. I think vitiligo just makes us just not another person in the sea of people and I think that is cool. Sorry this kind of was a ramble.
My daughter (about your age) also has Vitiligo. We are always looking for a cure for this disease and am also thankful for this website to share our knowledge, frustrations and hope. Has any of your family, Aunts, Uncles, Parents had any luck with any treatments? What do your doctors say you should do? supplements? I think if we all share our experiences, good or bad, we can work on the cure together. Who's in?
Thanks Sydney and good luck to you......and your family.
Done of my family has chosen to use any treatments. But my mom does use body makeup in the summer when it sticks out more to make her feel more comfortable.
Replies
Probably not the best time to look for research of a disease that is cosmetic at this time. Not that I don't relate had pretty noticeable vitiligo for more than 25 years now brought on by a deep burn in my right hand, then it galloped.
Any one is a Vitiligo Researcher?
During 10 years had vitiligo controled and reduced to a minimum. the treatment was with creams prepared by a Dermatologist. he never share the formulation, unfortunately he passed away and after 4 years the conditions has returned to my body. This happen after 20 year of being in total control.
i have a bit of the product and would like to somebody analyze it.
contact me if you are researcher and have the equipments required
Cheers
Carlos
Hey, this is my first post. I just signed up... can’t believe it took me so long to come across this website. I developed vitiligo about 4 years ago, and it’s been spreading since. I am currently trying light therapy and tofacitinib, which is a JAK inhibitor. It’s been a few weeks, but there aren’t any visible changes yet. In any case, thanks for starting this network!
Joy Banerjee, I am interested to know how the Tofacitinib is working for you? I have heard so much about this. Are you in the trial with a Dermatologist?
Hi Steve, just came back to vitiligo friends after few years absence. Got worse all over face and elbows. Will update photo soon. Hope to learn more and maybe chat.
Hello everyone,
can anybody guide me on how to find a person she has vitiligo and last time I saw her was 2002 and lost her info the name
Lilia Placencia she use to live in Inglewood CA.
Thanks
Carlos
My grandma, uncle, and mom all have vitiligo and they also all have Hashimotos. I just started to notice a couple spots on my chest and neck and i'm 17 I didn't think much of it until my mom saw one of my spots and said I have to come to her next appointment. I'm almost positive it is vitiligo since my family history and I also have Hashimtos. I curious to see how fast it spreads. My mom didn't get vitiligo until her 30s, so I didn't think I would get it yet. My family that has vitiligo has fairer skin compared to my Italian skin I got from my dad. I don't plan to cover up the vitiligo or treat it. I don't currently wear any makeup and don't plan on anytime soon. I wish I knew how it was going to spread. I think we need to educate more about the disease then change ourselves so people accept people like us. I think vitiligo just makes us just not another person in the sea of people and I think that is cool. Sorry this kind of was a ramble.
-Sydney
Hi Sydney,
My daughter (about your age) also has Vitiligo. We are always looking for a cure for this disease and am also thankful for this website to share our knowledge, frustrations and hope. Has any of your family, Aunts, Uncles, Parents had any luck with any treatments? What do your doctors say you should do? supplements? I think if we all share our experiences, good or bad, we can work on the cure together. Who's in?
Thanks Sydney and good luck to you......and your family.
Mike
Done of my family has chosen to use any treatments. But my mom does use body makeup in the summer when it sticks out more to make her feel more comfortable.
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