Posted by Cara Twillie on November 1, 2009 at 3:02pm
I check in here now and again and I see most people trying different treatments and make-up. I think we are doing ourselves and the children with Vitiligo a disservice if the first thing we say when diagnosed is "what can we do about it? how do we treat it?" I think we have seen from a lot of the comments that while some treatments do work, vitiligo tends to come back once treatment stops.
I could be completely wrong in my line of thinking but this has helped me from the start. We need to embrace those newly diagnosed and remind them of how beautiful, handsome, and wonderful they are! My doctor told me I was too beautiful to let Vitiligo stand in my way and you know what.....27 years later, I never have!!!!!! If we give positive reinforcement....it will help....I promise, but you have to start when diagnosed. If you are always looking for a treatment, your child or friend will feel like if they are not all one color that there is something wrong with them.......that is so not true. Stop worrying so much about what other people think or say....The ones who matter the most are going to accept you for who you are. I know it is easier said than done but make it a habit! Shrug off the stares or do what I do and stare back!!!! The more confidence you have in yourself, the more other people will accept you. Don't let someone you dont know affect your confidence. You know what you have to offer the world......let it shine!!!!!
I may just be a perpetual optimist........sorry if I offend anyone. Personally, I dont mind having vitiligo. It has made me a much stronger and more attuned to people's feelings. Call me crazy but I have had wonderful support since I was diagnosed at 7. Support is the key.
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I understand what you are saying, Cara. You are saying don't allow treatments take control of your child's life.
Babies and older children pick up on our positive and negative energy.
If you had plans for your child's life before vitiligo continue on with those dreams. The world places way too much emphasis on looks. You have to be the perfect 10. You have to look this way and not that way to be accepted. By whose standards? Who make these rules and how do they look? We are imperfect humans. Things will happen to us in our lifetime. We're born, live and die imperfect. My daughter is 14years old and I tell her not to be stuck on her looks. She is a beautiful girl but I want her to see past the face that stares back at her. I hope and pray she don't develop vitiligo but if she do and it hits her before she leave her teen years,hopefully it won't be that hard on her. My mom and grandmother always told me there is more to life than looks. This was said years before I had vitiligo. Children are the the ones that gives me strength because they complain less than adults and they are the ones that suffers the most. I agree with you Cara and thank you for bringing that point out.
It's not about being hard headed and I know everyone deals with it differently. If you want to do treatments....that is your perogative. I am more concerned about those with young kids being diagnosed. Treatment after treatment may make your child lose sight of who they are and what they are. We need to keep reminding them how special they are so that as teens and adults they are armed with a healthy self confidence and can hold their heads up high.
I have vitiligo on my face too.....I have i guess what is called universal cuz it is everywhere!!!!!! No makeup here....but that is my choice.....and I teach elementary phys. ed and they ask and I answer and keep on going!
I'm on the fence on that subject - meaning I don't believe in treatment until one day there is an announcement that they've found a 100 % cure. On the other hand I do have vit in my face and I personally feel more comfortable in social settings with makeup on. I'm not going to use all these chemical/steroid ointments that may do me more harm than good, and just the other day I was on the site and I saw a friend who is going through treatment and she's like burning her skin through some sort of laser treatment. That's too much -- to each is own --- but I'm not going that far. If I turn completely pink than I just do -- because I'm not burning my skin to make the color come back. No harm intended to those who try -- I perfectly understand why you do it -- I just can't. Keep pushing the optimism Cara you just might reach us hard headed ones one day :)
Everyone deals with vit differently. Personally, my main focus TREATMENT period! I know it sounds shallow but that’s the only thing which keeps me going.
Cara you are exactly right! My parents and friends were amazing with supporting my self confidence and never treated my vit like something that needed to be changed or treated. It makes such a difference to have that support in your life at a trying time like being diagnosed. We all need to take example from this and go forth strongly and with confidence!
I don't use make-up to cover my vitiligo. The kids that I teach have asked and I tell them what it is. Once they learn what it is they don't say much more about it. I have had vitiligo since 5th Grade, white hair patches that I did dye while in junior and senior high. I guess I since I have had vitiligo for so long I really don't think about others looking at me.
O.K. Your crazy! But I'm crazy too LOL!. I used to service elevators at some of the hospitals and when I see kids walking through the hallways wearing a ball cap to hide their baldness that is what inspires me the most.Their courage. Deep down I'm an old softy I get a little teary eyed and realize my vit is nothing compared to that damn cancer that plagues mankind.
I'm listening to anyone who needs to be heard about their vit.
Replies
Babies and older children pick up on our positive and negative energy.
If you had plans for your child's life before vitiligo continue on with those dreams. The world places way too much emphasis on looks. You have to be the perfect 10. You have to look this way and not that way to be accepted. By whose standards? Who make these rules and how do they look? We are imperfect humans. Things will happen to us in our lifetime. We're born, live and die imperfect. My daughter is 14years old and I tell her not to be stuck on her looks. She is a beautiful girl but I want her to see past the face that stares back at her. I hope and pray she don't develop vitiligo but if she do and it hits her before she leave her teen years,hopefully it won't be that hard on her. My mom and grandmother always told me there is more to life than looks. This was said years before I had vitiligo. Children are the the ones that gives me strength because they complain less than adults and they are the ones that suffers the most. I agree with you Cara and thank you for bringing that point out.
I have vitiligo on my face too.....I have i guess what is called universal cuz it is everywhere!!!!!! No makeup here....but that is my choice.....and I teach elementary phys. ed and they ask and I answer and keep on going!
I'm on the fence on that subject - meaning I don't believe in treatment until one day there is an announcement that they've found a 100 % cure. On the other hand I do have vit in my face and I personally feel more comfortable in social settings with makeup on. I'm not going to use all these chemical/steroid ointments that may do me more harm than good, and just the other day I was on the site and I saw a friend who is going through treatment and she's like burning her skin through some sort of laser treatment. That's too much -- to each is own --- but I'm not going that far. If I turn completely pink than I just do -- because I'm not burning my skin to make the color come back. No harm intended to those who try -- I perfectly understand why you do it -- I just can't. Keep pushing the optimism Cara you just might reach us hard headed ones one day :)
Everyone deals with vit differently. Personally, my main focus TREATMENT period! I know it sounds shallow but that’s the only thing which keeps me going.
I'm listening to anyone who needs to be heard about their vit.