Well, it’s been nearly 2 years since our middle was diagnosed with vitiligo. This autoimmune disease that attacks the pigment in her skin is progressing faster than we expected. She is still okay with the changes, though, I have noticed her changing into her leotard a bit faster at ballet class and asking more questions in regards to covering up some spots (though not her favorites!).
(feet – seem to be progressing quickly – as does her torso; the spot near her eye is more faint – and for that I am grateful.)
She was 4 years old when we discovered her first “spot.” At that point, we had no idea how this would progress. In the past two years, we’ve noticed that yes, it is symmetrical. What she has on one side eventually appears on the other; and in the last year, it has appeared on her face – around her eyes and nose.
Her first white spot appeared after a scrape on her knee had healed. Summer 2010.
Vitiligo on knees 2011. Do you see the smiley face? That is her favorite “spot.”
Vitiligo now 2012. She still loves that smile on her right leg.
I received a comment on another vitiligo post I made last year. I found it thought-provoking… here is the comment:
“Hello, it is interesting hearing your story. Especially because your family is white. Usually black people speak out more because it so obviously affects them more. But I am wondering, why was the diagnosis so difficult for you. I figure that she is already white. So if her skin color begins to change it will not be a stark contrast, so it won’t affect her the same as someone who is black. Can you please give me insight.”
At first, I was offended. Yes, we’re white – but you think it won’t affect her the same way as someone who is black? I don’t know how it will or won’t affect her or anyone else for that matter, I thought it presumptuous for the commenter to assume! I was taken back by that comment.
Then, I took a step back and reread the comment. She’s right. It is not as obvious on a caucasian as it is on someone who is black. And, why was the diagnosis difficult for me? What a great question.
It’s hard for me, because I am her mother. I want to protect her. I fear the day when she looks in the mirror and doesn’t see the amazing, wonderful person that she is… but sees someone with two different skin tones. I fear the day some idiot makes a comment about her skin and she becomes self-conscious. Right now, she is 6 and content with every part of who she is. What will happen when she is 16? I was 16 once, it is a difficult period with your peers and your self. What will happen then? I guess the diagnosis was also difficult for me, because it was out of our control. We have no idea how her skin will change over time. It’s also challenging because, I don’t know how long our three children will believe that who you are on the inside is what defines you – when we live in a culture that believes your outsides define you?
Vitiligo does not define us, but, it has changed how we do things. Our middle always wears a hat and very often protective sunglasses when we are outside. All five of us now slather on 50+ SPF sunscreen before heading out the door (I learned just how quickly the middle burns now – and I will not let that happen again). No longer do we purchase the cute little bikini – rash guards are our new choice (though its difficult to find cute, feminine ones that the middle will approve of) as is a sun tent with protective material. We’ve made life changes that will be better for all of us (and our skin) in the long run.
No, vitiligo does not define us. We go about our life like everyone else… jumping on the trampoline, playing in the pool, enjoying our life…
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Vitiligo in the news:
Mom Learns Airbrush Tanning to Help Teenage Daughter who Suffers From Vitiligo
New Skin Transplant Method For Vitiligo Patients
My 3 Tartlets 
This was my direct response to the woman who left the original comment:
It’s hard to say how vitiligo will affect anyone. Any change to your appearance that is out of your control is jarring. Yes, it is more obvious on someone with dark pigment, that is true. Why is this difficult for me? Because my 6 year old daughter is losing her pigmentation, people stare, she’s more sensitive to UVA/UVB and one day – she will look in the mirror or have an insensitive comment spoken to her and she’ll realize that she’s different, her”spots” aren’t beautiful to everyone. (I’m a mom. She’s my baby girl. I think that alone is reason enough.) Vitiligo sucks for everyone who has it, regardless of color, and there is no cure. I’m not sure if this is the insight you are looking for – but it is what I can give.
Also being a mother of a 6 year old (boy) with vitiligo, I can agree with all you say. He has an olive colored skin, and it is quite noticeable. He has it now covering about 1/3 of his body! He has no problem with it at the moment, it is just other people who stare that I don’t like.. He is such a fun and happy boy and it doesn’t seem to get him down at all.
Have you ever said something to one of the “starers?” We’ve been lucky here – but, I am very, very worried about kids in the States, where appearance is important and differences tend to leave you out. I wish we could get our two 6 year olds together! They both seem like characters!
Oh how I wish they could meet up 😦
When people do stare, Alfie just looks at me and says… are they are looking at my special skin? It is the parents that stare and not the children!! Sometimes I have just stood and stared at them until they look at me, then I tell them that he has Vitiligo and would they like me to explain to them? They usually walk away……. The children are all great with him and he has a number of good buddies that would look after him!
Sometimes I could just cry when I see him in the bath or running around the house in his pants..
I’m so glad he has good friends! I’m hoping she will meet some once we are back, we moved when she was so young. You know – I really believe that, at this point, this is so much harder on us parents. I am the same – I fight my tears during baths/at the pool/running around. But then, there are days – I don’t notice at all. There is so much I want to do, to learn…
I adore the smiley spot! You are a fabulous family and I have no doubt G’s real beauty will be solid in her.
Your kids will be fine. As they grow up they will adjust to the people and the stares. They will not let the spots define them. They will get tired of people asking, but will overcome. I think kids adapt more positively to the spots than adults.
Hi “Mother of three Tartlets”,
I am Suraj, an Indian who has lived with Vitiligo for 19 years. I am now 26, it started when I was 7. More about my story later.
All I want to say right now is, YOU ARE SUPER LUCKY that you are in GERMANY. Please go and see Dr. Schallreuter in Greifswald (North germany). You can get more details about this Doctor at http://vitiligo.eu.com/
I live in Australia and travelled to Germnay this January and then went to Jordan, Dead SEA this year in May with her. I had stopped doing any treatment when I was 15 and now after 10 years I started treatment under her again. At Jordan I met few German patients (kids) who came with their parents. And one of the parents told me that their girl (12 yo) had depigmented 80% and when I saw her this year she was hardly dipigmented on around 5% of her body, she had been doing the treatment for 2 years.
If you need more information then you can contact me via my blog http://www.guptsur.com . I too had given up the fight 10 years back but this year I decide to give myself one last chance. And I am so glad I did. She is 72 years old and does this only to help people not for money anymore. For me she is a God send, I cannot stop praising her.
I am getting good results. If you want my pictures as proof, I can mail you them. I know it might be sounding weird, right ? You don’t even know me. I am showing so much interest because my vitiligo started when I was 7 and I don’t want any kid to go through what I had to. And considering you are in Germany, I was like .. i have to have to tell you about my Gardien Angle.
And never say Vitiligo is not curable .. that is what doctors tell you because they don’t want to do any hard work. Real “Emily’s Vitiligo” for inspiration. IT Motivated me to start my fight against vitiligo.
My daughter just turned eight. I noticed her white spots a few months ago. Since then it has been progressing. The back of the legs is the worst, stomach, arms, feet, forehead. Kids at school are asking what’s wrong with her legs. 😦 Makes me so sad. Still waiting to for her doctor appointment, so trying to do my own research on this. I would like to know of any cures anyone is aware of. Thank you!
Hi Guptsur,
I have seen your blog and also read about the dead sea treatment. Have you seen any considerable improvements after the treatment? I did not see any updates on your blog.