If you're at this site you may have some questions. I'll do my best to answer any questions you may have. These are a few I wish I would have had answered....
What happens at the Dermatologist?
The Dermatologist won't hurt you. Most are very nice. I should know, I have been to a lot of them.
Most of the time all they do is look at your vitiligo to see if they can help you.
He or she might say you have to put cream on. Don't worry; it's not the worst thing in the world. In addition to the cream you might need to be out in the sun for a while or you might need to get UVB light treatment. I wasn't sure I would like going in the light box. It was big and had lights all around. It sort of looked like a closet with long light bulbs covering each wall, and the top was open. I went in my underwear and goggles to protect my eyes. I had to close the door. My mom was just outside and she talked to me while I was inside. I was only in it for about a minute. The light goes on and then turns off. When it's off I get to come out and get dressed again. It's really private and no one else sees you. After the first time I realized it was no big deal. Each time you go you stay in the light box for longer. I think I worked up to about 3 minutes.
There's only two things, so far that were uncomfortable. You might need to have blood taken. I don't really like that part but I know they have to do it sometimes. It only takes about half a minute and my mom bought me an Icee after both times I had it done. They were checking something called a thyroid and checking to see if my Folic acid and B 12 levels were ok. They were both OK.
If your Dermatologist isn't sure that you have vitiligo you may need to have a biopsy. They would take a very small, thin piece of skin, smaller than a pencil eraser is around, and about the depth of a piece of paper. Then they would send it to the lab. I had it taken from the back of my upper thigh. The doctor numbed the area first, so I wouldn't feel it, and then took a quick punch of skin with something that looked sort of like a stapler. I had to have a couple stitches but I was okay. I didn't even cry. I got to show off my first two stitches to my girlfriends at school. But you probably won't even need this.
What to do about Teasing?
I have been called all sorts of names. Maybe you have heard these too. Cow, Dog, thought you rolled in mud, why did you paint yourself, chocolate and vanilla. (I actually thought that if I were chocolate and vanilla it wouldn't be so bad)
I thought they were mean, but I usually just say I have two colors of skin and I was born this way If they are trying to be mean, they probably won't care what you say, but if they just don't understand, it might help them. Most of the time, if kids know more about it they will leave you alone.
If anyone makes fun of you they must have something wrong with them. They are trying to make themselves look good by putting other people down.
Sometimes people just don't understand what it is, so you can explain it to them, if you want. I feel like if I can explain it, then maybe I am educating them and if they see someone else with vitiligo they won't have to ask about it again. Also maybe they have a family member that has white spots that may have never known what it was.
One idea you can try is to make up cards. (Scroll down to PROJECTS and you can download your own cards)
I got tired of explaining so I came up with the idea of handing out cards. They have the Vitiligo Support International website on them and I put "I'm just like you, I just have two colors of skin" plus some of the other stuff about not being contagious. I went to Kinko's with my mom and picked out bright colored paper and I printed them and cut them all out. At home I put colorful stickers on the back to make them more "fun". My mom keeps them in her purse now and if someone is staring or asks about my vitiligo, I can give them a card, if I feel like it.
An example of what happened to me
At school two boys were making fun of me and my friend. My friend breathes loud because of her asthma so they said something about that. They said my skin was ugly. We told them to stop but they wouldn't, so we told a teacher. The teacher told them to apologize and if it happened again they would be suspended. It hasn't happened again.
If someone makes fun of you, you can just walk away. Or you could tell them you just have two colors of skin. If they keep bothering you, after you tell them to stop, you can ask you teacher, parent, school nurse, principle or older brother or sister for help.
FEELINGS
I feel different things at different times. Most of the time I'm happy but it's okay to be sad sometimes too. If you're sad, I know how you feel. I feel sad when people call me names. I feel hurt by what they say. Even though I realize they just don't understand, or they're just trying to make themselves look better, it still hurts sometimes.
Sometimes I get mad that they could be so stupid and say such dumb things. I get frustrated when my mom tells me I have to put the cream on...AGAIN Sometimes I just don't want to do it. I feel like I'm just fine the way I am, why should I have to put on the cream. I know, mom says if I get my color back I might be safer in the sun, but I still don't like putting it on.
I feel HAPPY when I get to travel and see my friends that have vitiligo. I went to the First Vitiligo Convention in March of 2000. It was in San Francisco. I met other kids and adults that had skin that looked like mine. One boy came all the way from Hawaii! Some had it all over, like me, and some just had a spot here and there. I really enjoyed talking with everyone. I stayed up until midnight!
Over the summer we went to Europe. My mom talks with other parents on Vitiligo Support.org. She had been talking to another mom in England. We got to meet her son who was my age. His family was really cool. I had fun playing with him and his little sister. He just had one small spot on his lip.
When I was really little I think I thought I was the only one with skin like this. (I felt alone) My mom discovered through the Internet that there are people from all over the world with vitiligo. We put up a map of the world on our wall and we put pins in the places that everyone was from. It made me feel better to know there were a lot of others, all over the world that looked like me. There was even a man from Abu Dhabi, by Saudi Arabia. He told me he walked by alligators to get to work!
PROJECTS:
PUT UP A MAPAsk your parents if you can put up a map of the world and track where everyone is from. I mounted my map on foam core board so I could push the pins in and not go through the wall. I put a little paper flag on each pin with the persons name on it, and then stuck it in wherever they lived. You could have different colored flags for boys and girls.
You will need some help from a parent. Have them get on one of the Vitiligo Websites. Vitiligo Support is my favorite but there are others. Then have your parent post a message and ask where everyone is from. Tell the members on the list what you are doing with the map and flags.
LEARN A NEW SONG
Have you heard a song called True Colors, by Cindy Lauper and Phil Collins? I thought they were singing Two Colors when I first heard it. I said Hey, Mom; they should have this as the Vitiligo theme song because I always say I just have two colors of skin.
Here are the words to True Colors but we changed them to "TWO COLORS".
You with the sad eyes
Don't be discouraged
Oh, I realize It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small
Chorus:
But I see your TWO COLORS
Shining through
I see your TWO COLORS
And that's why I love you
So don't be afraid to let them show
Your TWO COLORS TWO COLORS are beautiful
Like a rainbow
Show me a smile then
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there
And I'll see your TWO COLORS...
Chorus
When my mom and I were looking for the lyrics to the song True Colors we found this interview. We thought you might like to read a few of their answers. Questions for Cindy Lauper and Phil Collins about True Colors
Q.Why does he speak of true colors?
A."True" means natural, not artificial, not just for show. The friend seems to hide himself behind fake colors; he wants to make believe that he is someone else. In the long run such a disguise makes you ill.
Q. Is it good if someone accepts your True Colors?
A. Yes, I think so. If someone urges you to change yourself, it implies that he/she does not accept and love you just the way you are. If somebody accepts all your weak points, it means that you don't have to disguise yourself in front of him/her, that you can be yourself.
CARDS
You can print out your own cards. Try to print them on colorful paper and you can color or you can put stickers on the back of each card to make them more fun.
PLAY ACTING
Practice play-acting what to say if someone asks about your vitiligo with your mom or your sister, or dad, or whoever you feel comfortable with. Sometimes I pretend my mom has vitiligo and I ask her about it. Sometimes we pretend like someone just wants to know more about it so I say it's just the loss of color or pigment in my skin. I just have two colors of skin. You can't catch anything. Would you like to feel it? It feels the same as your skin
If someone is trying to tease me, I have a different way to respond. I can walk away or I can ask them to stop. I usually try not to show that what they are saying bothers me. I try to remember that if someone is making fun of my skin, it's not me that's the one with the problem. I also know that I don't need to get back at them. We usually end up joking around and laughing, so don't take it too seriously. Have fun with it.
PUPPETS
You could make sock puppets to talk back and forth about vitiligo, or you can have them talk about whatever you want.
You will need:
1 sock per puppet (make sure you ask your parent for an old sock)
Buttons or googly eyes for eyes
Felt or pompom for the nose
Felt for the tongue
Yarn for the hair
Markers to draw on the vitiligo
Material for the clothes
Glue or needle and thread to put it all together.
Use your markers to color on the vitiligo spots. You can be creative and use any colors you like. Sew or glue on the eyes and the nose. Cut the felt to look like a tongue (a long U shape) then hold your sock on your hand to find where the mouth will go, then glue the tongue in place. Sew or glue the yarn on for hair. For the clothes just use a rectangle of material and wrap it around to look like a shirt or dress. Don't make it too tight or you won't be able to get it on and off your hand. You can add lace and buttons for girls or add a collar for boys. If you don't have some of this stuff you can just draw it all on.
MY DISCOVERIES
I have made a few discoveries while living with vitiligo. One is that I'm not the only one in the world that is different. Every kid in my class has something that makes them different. I think I used to wonder why I was the only one that had to be different, but now, when I really take a look at everyone around me, I can see that no one is perfect.
The second thing I figured out was that, so far, there's nothing I can do about my vitiligo. The only choice I have is how I deal with it. I can be really angry and bothered by it or I can choose to make the best of it and accept that this is the way it is for now. I'm going to have vitiligo whether I'm happy about it or not. Why not choose to be Ok with it and focus on the good stuff in my life? If some jerk teases me, I'm not going to let him ruin my day. Some person I don't even know cannot decide what I think of myself. I have lots of friends and family members that love me just the way I am, and they count MUCH more than some rude goof ball that doesn't even know what he's talking about.
Another discovery is that I am WAY more than just my vitiligo. I'm talking about it a lot at this site because that's what everyone is here for, but normally I don't really talk about it or think about it all day. I have lots of other things to think about. Some of them include....
ART
I like to draw and paint and do crafts.
MUSIC
I play the clarinet. I love music and want to be a singer some day. I sing around the house all the time. I have a little piano keyboard that I take everywhere and sometimes I make up songs.
The Backstreet Boys, Brittany Spears, Santana, Madonna, B.B. King, Natalie Cole, Seal, Celine Dion, Chris Isaac, Buckwheat Zydeco, Christina Aguilera, and Ricky Martin are just a few of my favorites.
FRIENDS
I have friends over a lot and sometimes we make up games to play. Sometimes we put on plays or we do chalk on our driveway. A lot of my friends are in my Girl Scout troop. We do all kinds of fun stuff like camping, field trips, crafts and camp outs. In the summer I go swimming in the pool with my friends almost every day. I like to swim with my dad too.
BEACH
We live by the beach and sometimes I like to go boogie boarding. We usually go towards the end of the day so I don't have to put so much sun block on. The sun is not so bright and parking is better. Sometimes we bring food and have dinner there and watch the sun go down.
READING
I love to read. Some of my favorite books are:
Harry Potter, By J.K. Rowling (All 5)
Holes, by Louise Schar
Good Burger to Go By Steve Holland
Different Just Like Me, by Lori Mitchell (My Mom!)
I like all the I SPY books. The ones where you have to find the objects in the pictures.
My favorite magazines are: Disney, Nickelodeon and National Geographic WORLD magazine.
MY CAT
My cat is the cutest in the world. Her name is Allove. I found her in the street at my uncle's house. She was dirty and covered in fleas but she jumped up into my arms and purred. She was so sweet. Since she didn't have an owner we took her home and cleaned her up. She was really loving so that's how she got her name.
SOURCE:VITILIGO SUPPORT ORGANIZATION |
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