Sep 10, 2014

What I Want You to Know About Vitiligo

Vitiligo is an unknown disease for the average American. Most people have seen vitiligo but they are unaware of what they are seeing. I have two children with Vitiligo and I'm constantly explaining the cause, treatment, and symptoms of the disease.

Occasionally I meet people who think they know what Vitiligo is but they are completely wrong. For example a mom at the pool was convinced that it was a rash and tried to get my kids kicked out of the pool so her kids wouldn't catch it.

I had another one of these moments last week at the gym. One of the childcare workers asked what happened to Molly's knees. I went into a short explanation of vitiligo and she said "oh OK." No harm no foul. Finally I'm explaining my child's medical condition and it went well.

Wrong.

The other childcare worker just had to open her mouth and say "you get it from stress; it's too bad you were stressed when you were pregnant so she got vitiligo."

I'm very proud of myself; I didn't punch her in the throat. This isn't the first time this woman has said something about my kids that pissed me off.

In that moment I realized I need to do a better job at spread awareness about Vitiligo. If only I had a platform to do that!



What is Vitiligo? 

Vitiligo is an autoimmune disorder. Just like type one diabetes or celiac disease.

Vitiligo develops when cells called melanocytes die. These are the cells that give us pigment. 


Vitiligo normally affects the skin but it can attack anywhere you have pigment including the inside of your mouth or hair.  


Vitiligo is most likely a genetic disorder. 


You are more likely to get Vitiligo if other autoimmune diseases run in your family especially Hashimoto's disease (thyroid) or alopecia areata (hair loss). 


Vitiligo is life alternating, the social stigma of looking different increases when more of your skin loses its pigment.  




What Vitiligo Isn't

Vitiligo isn't contagious or life threatening. You can't catch it. It's not a rash!

Curable. There are limited treatment options but there isn't a cure.

A disease that gets attention. Very little funding or research goes into Vitiligo.


What I Wish You Knew About Vitiligo

I want you to medically know what Vitiligo is and in not. I also need you to know that it breaks my heart that my twins have Vitiligo. Yes it could be worse, but that doesn't make me feel good about it.

I hate watching people stare at my children when their white spots are visible. Please don't point and whisper, ask me and I will explain.

I cry when I overhear my daughter asking Daddy if she's still beautiful even though she has white spots. She's four years old and she already is struggling with body image. I hate that the most.

I have researched Vitiligo extensively. My children are being seen by an amazing group of doctors at a teaching hospital. My children are receiving the treatment that the doctors and my husband and I agree upon. Please know that our treatment options are not up for debate with you.

I really wish you knew that when you dismiss my worries you are being unsupportive. Telling me that it's not that noticeable or that it could be worse tells me that I can't talk to you about my struggles as a mother.

Most importantly, I wish everyone would realize that my children hear what you're saying right in front of them. They hear you blame me for their disease and comment on how sad you are that they are different. They hear you when you say it's no big deal and that you still think they're beautiful.

They can hear you, so choose your words carefully.




7 comments:

  1. Thanks for the information. The more aware we can be of one another's struggles the better the world will be for our children. I actually have a undiagnosed pigmentation issue right now. This was interesting. Although, I don't think it's the same thing, it's useful to gather info. Your daughter is a cutie!

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  2. Thank you. Good luck on getting a diagnosis on your pigment problem. It's so frustrating when you don't know what is wrong.

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  3. Thank you for the information! I haven't found a whole lot of information on the Internet about childhood vitiligo and appreciate your blog post. I'm currently questoning in my identical twin 4 yr old girls have it. One of them had a unpigmented spot on her neck about a yr + ago and the pediatrician just kind of blew it off saying it was probably a birth mark. Now each of my girls have similar spots on their arms. After reading your blog I may look into taking them to a dermatologist. TY!

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  4. I used to have vitiligo all over my body and although I accept the reasons to not want to get rid of it but personally it was something I wanted to do. I tried a million creams & supplements but nothing ever really did anything for me but I was actually able to dramatically reduce my vitiligo after browsing online and trying different methods. The 3 things that worked for me (do them all):

    1. Mix Turmeric Powder And Mustard Oil. This stuff works amazing by just mixing the oil with the powder, applying to the affected skin and leaving it for about 15mins before drying it off. Repeat daily or more.

    2. Drink water stored in a copper utensil. This will help in increasing the production of melanin in your body and your skin will show reduced whiteness.

    3. Follow every single step in the free video & in the guide seen at naturalvitiligotreatmentsystems.com to get to the root of the problem naturally!!

    Try my advice and hopefully you will get as much luck with getting rid of your vitiligo as i did :) xx

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  5. My son has vitiligo he's 9 years old and it also breaks my heart that he feels bad that he has that skin condition he doesn't feel comfortable in his own skin I wish there was something I could do for him. I tell him that's he's special and god made in him that way. He hates when people stare and ask what's wrong with his skin.

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    Replies
    1. My daughter hates it too. She tells me that she donesm't like it when people talk about her spots. I breaks my heart too.

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  6. My son has vitiligo he's 9 years old and it also breaks my heart that he feels bad that he has that skin condition he doesn't feel comfortable in his own skin I wish there was something I could do for him. I tell him that's he's special and god made in him that way. He hates when people stare and ask what's wrong with his skin.

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