Posted by Cheryl on August 18, 2014 at 2:09pm in Main
My son has had vitiligo since he was 4 yrs old. He is now 10. He has vitiligo pretty much on 50% of his body. Where it is most visible is his hands, elbows, knees and feet. As a parent, I worry about his future all the time. Questions like, will he ever find someone to love him? Will he have a family? Will he have a successful career? I am constantly making sure I am positive with him and building up his self esteem. Letting him know that he is loved and that can achieve anything he sets his mind to.
I am looking for words of hope for his future. Knowing that there are people out there that lead happy and successful lives. For those of you out there that have vitiligo, are there words of hope you would like to share?
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I am a Chinese, in Beijing. My son is 11 years old suffering from vitiligo.When he was 26 years old I found the treatment of vitiligo method (I'm a doctor). Off and on for his treatment for three months, because his job is guide,it was nessery to take the tour to the other place,. Suddenly one day he went to the United States. At that time according to my standard his vitiligo is not healed at all, and far worse. Three years later ( 29 years old) he got married in the United States. Today he's happy, mature and steady. Once I worried for his later, especially marriage.
2 on the cure: if you can meet my requirements: you and your son spend an hour every day for two months I am sure you can see hope of cure the disease. My treatments method, one light and one medicine. The light I mail to you and the medicine I mail to you at first. I will teach you how to make the medicine by yourself in the future(all free) .In addition, without any conditions on cure, of course, I practice to comply with U.S. law.Best wishes
I can't say you that when we are child the things are easy. We don't have experience still and for another childs vitiligo is something new. They never seen it something similar. So people look at you. But they look out of curiosity, not bad. But for us, and more when we are child, it is very uncomfortable.
However, while we become adults we are going learning. And no only learn people with vitiligo, but also most of the people is going learning. I think the best problem of vitiligo is the ignorance. A lot of people have vitiligo, but very few people knows something about it. And all people who know something about vitiligo know that vitiligo isn't nothing wrong. They don't give to the white paches more importance that they have. So I think we have to work on it. We have to report what is vitiligo and we have to get that the awareness of vitiligo will be general. While the doctors investigate we have to expand information in the society.
Anyway I think your son will be happy in his life. The research advances and we will continue fighting until to find a cure or, at least, until the vitiligo is seen like something normal. Now I am 31 years old and I can say you that I have vitiligo, I have a lot of friends, I have a lot of people that loves me, I have a good job,... my life is full and I am happy.
I have Vitiligo all over my body and I feel alot better now that I let people know I have it. I hid it for the longest time because I was ashamed but I got tired of hiding. I go out without makeup at times and I tell myself that I've seen people who have issues dealing with all sorts of skin problems but they hold their head high and it makes them look Beautiful.. That's what we have to do...because we are who we are...and i just thank god that I'm something that's not going to kill me...It's just the V thing....We have to hold our head up high and remember it's just because we have a pigment problem....Your son has a Beautiful smile and don't let anyone take that from him...Let him know that alot of stars have Vit..one name is Michael Jackson's son...and he is famous and his vit...hasn't stopped him from doing what he wants to do. If people don't like the way we look they dont' have to look......the people who are rude...and stare at us ....have a issue with themself..and it's not anything we can do about it......but just keep our head up high and stay focused on our dreams...My dream is to have a successful tax business and currently making things happen~~~
I have had the "white patches" on all my joints and face since I was 6. My parents tried variety of things when I was younger but nothing really helped. What helped most was their support, showing me that love doesn't care about the way you look, that you can be great at school, at sports whatever you choose regardless of the way you look.
I learned to live with vitiligo much sooner than I learned to spell or pronounce it... Based on my personal experiences, I don't think that it's going to define your son future.
I have a great career, awesome friends and family despite looking the way I do (I like to call myself unique, which thinking of the current societal norms - is not necessarily a bad thing to be...). Occasionally, me or a friend / colleague, do notice another “patch” or a “dot” that pops on my body (recently my face), but we all know that this is just the part of me being who I am.
When the cure is here - and I think one day it will be here - I will certainly go for it, but I don't live my life waiting for it to show up...there is far too much cool stuff to do and I hope we all can enjoy it!
Sending you and your son warm thoughts!
Robot > Magdalena SchoeneichAugust 24, 2014 at 5:31pm
Hi Madalena, you said really nice words. I think parents must do exactly what yours did. They did a great job!
However, I think Cheryl's son has also the right to fight Vitiligo while there is hope. Nowadays, there are much more available treatments than when you were 6. It's known, for instance, that oxidative stress play a big role in vitiligo. UVB-NB is much better than UVA and UVB-BB. Those are a few examples...
2-Follow a dairy-free and gluten-free diet. Replace cow milk for coconut milk
3-Don't take Vitamin C.
4-Take fish oil, Probiotics, Complex-B, Betacarotene, Vitamin E, Zinc and Selenium.
5-Check thyroid, adrenal and liver (by blood test).
6-Apply protopic once a day on face patches only (before bed).
7-Apply pseudocatalase 2x a day (before 9AM and after 5PM). Then wait 15 minutes and take a 10 minute sun bath or 30 second UVB-NB phototherapy session (talk to a doctor before any phototherapy).
8-Last but not least, avoid any physical trauma (friction, injuries, scratches, sun burns, itches, etc.). This is the most important recommendation.
By this article, it states early morning sun has most UVA, not UVB, it will wrinkle and harm our skin, we should wait until close to 11am, at that time, sun is about 50 degree above horizon, at that time, it will have more UVB, this will give us Vitamin D (UVA will destroy Vitamin D), help skin regiment, we might do more research about this.
Best thing to do is to supplement Vit. D and take low dose of UV (whatever). That's why I suggested early morning. Vitiligo is a puzzle. It's hard to reach a compromise. Sun bath after 10AM is definitely harmful for vit suffers.
I am doing around 9 am sun now with just started protopic 0.1%, I am l little bit confused now about the difference UVA and UVB, we should avoid UVA because it cause more damage to the skin, but we need a little UVB to re-pigment, which also get vitamin D from UVB( not UVA) which is very important for all kinds of reasons including vitiligo, that is what I understand from this article, I might try NB-UVB later, because it is safer, it has no UVA involved.I was told by a pediatrician a while ago, she said the best sun ray is from 10:00am to 10:15am. I feel comfortable around 9 to 9:30am in FL.
Replies
Cheryl,I have two questions:
1My son.
I am a Chinese, in Beijing. My son is 11 years old suffering from vitiligo.When he was 26 years old I found the treatment of vitiligo method (I'm a doctor). Off and on for his treatment for three months, because his job is guide,it was nessery to take the tour to the other place,. Suddenly one day he went to the United States. At that time according to my standard his vitiligo is not healed at all, and far worse. Three years later ( 29 years old) he got married in the United States. Today he's happy, mature and steady. Once I worried for his later, especially marriage.
2 on the cure: if you can meet my requirements: you and your son spend an hour every day for two months I am sure you can see hope of cure the disease. My treatments method, one light and one medicine. The light I mail to you and the medicine I mail to you at first. I will teach you how to make the medicine by yourself in the future(all free) .In addition, without any conditions on cure, of course, I practice to comply with U.S. law.Best wishes
I can't say you that when we are child the things are easy. We don't have experience still and for another childs vitiligo is something new. They never seen it something similar. So people look at you. But they look out of curiosity, not bad. But for us, and more when we are child, it is very uncomfortable.
However, while we become adults we are going learning. And no only learn people with vitiligo, but also most of the people is going learning. I think the best problem of vitiligo is the ignorance. A lot of people have vitiligo, but very few people knows something about it. And all people who know something about vitiligo know that vitiligo isn't nothing wrong. They don't give to the white paches more importance that they have. So I think we have to work on it. We have to report what is vitiligo and we have to get that the awareness of vitiligo will be general. While the doctors investigate we have to expand information in the society.
Anyway I think your son will be happy in his life. The research advances and we will continue fighting until to find a cure or, at least, until the vitiligo is seen like something normal. Now I am 31 years old and I can say you that I have vitiligo, I have a lot of friends, I have a lot of people that loves me, I have a good job,... my life is full and I am happy.
Lot of spirit!
:-)
I have Vitiligo all over my body and I feel alot better now that I let people know I have it. I hid it for the longest time because I was ashamed but I got tired of hiding. I go out without makeup at times and I tell myself that I've seen people who have issues dealing with all sorts of skin problems but they hold their head high and it makes them look Beautiful.. That's what we have to do...because we are who we are...and i just thank god that I'm something that's not going to kill me...It's just the V thing....We have to hold our head up high and remember it's just because we have a pigment problem....Your son has a Beautiful smile and don't let anyone take that from him...Let him know that alot of stars have Vit..one name is Michael Jackson's son...and he is famous and his vit...hasn't stopped him from doing what he wants to do. If people don't like the way we look they dont' have to look......the people who are rude...and stare at us ....have a issue with themself..and it's not anything we can do about it......but just keep our head up high and stay focused on our dreams...My dream is to have a successful tax business and currently making things happen~~~
I have had the "white patches" on all my joints and face since I was 6. My parents tried variety of things when I was younger but nothing really helped. What helped most was their support, showing me that love doesn't care about the way you look, that you can be great at school, at sports whatever you choose regardless of the way you look.
I learned to live with vitiligo much sooner than I learned to spell or pronounce it... Based on my personal experiences, I don't think that it's going to define your son future.
I have a great career, awesome friends and family despite looking the way I do (I like to call myself unique, which thinking of the current societal norms - is not necessarily a bad thing to be...). Occasionally, me or a friend / colleague, do notice another “patch” or a “dot” that pops on my body (recently my face), but we all know that this is just the part of me being who I am.
When the cure is here - and I think one day it will be here - I will certainly go for it, but I don't live my life waiting for it to show up...there is far too much cool stuff to do and I hope we all can enjoy it!
Sending you and your son warm thoughts!
Hi Madalena, you said really nice words. I think parents must do exactly what yours did. They did a great job!
However, I think Cheryl's son has also the right to fight Vitiligo while there is hope. Nowadays, there are much more available treatments than when you were 6. It's known, for instance, that oxidative stress play a big role in vitiligo. UVB-NB is much better than UVA and UVB-BB. Those are a few examples...
Cure is really on its way... http://www.researchforvitiligo.com/
These are the best words of hope.
In 2 years at most, this medicine will be available in Europe. Your son will be 12 (still very young to start his cure).
In the meantime, do your best to stop spreading. Suggestions:
1-Take Anti-Oxidants moderately (ALA, L-Glutamine, L-Cysteine)
2-Follow a dairy-free and gluten-free diet. Replace cow milk for coconut milk
3-Don't take Vitamin C.
4-Take fish oil, Probiotics, Complex-B, Betacarotene, Vitamin E, Zinc and Selenium.
5-Check thyroid, adrenal and liver (by blood test).
6-Apply protopic once a day on face patches only (before bed).
7-Apply pseudocatalase 2x a day (before 9AM and after 5PM). Then wait 15 minutes and take a 10 minute sun bath or 30 second UVB-NB phototherapy session (talk to a doctor before any phototherapy).
8-Last but not least, avoid any physical trauma (friction, injuries, scratches, sun burns, itches, etc.). This is the most important recommendation.
Best thing to do is to supplement Vit. D and take low dose of UV (whatever). That's why I suggested early morning. Vitiligo is a puzzle. It's hard to reach a compromise. Sun bath after 10AM is definitely harmful for vit suffers.
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