Matt's Message for Kids

Hi. My name is Matt. I am 8 years old and in the second grade. I have one mom, one dad, one brother, one sister, two dogs, and three cats. My favorite things to do are skate board, skating and drawing. Me and my brother are going to build a skateboard ramp. My favorite food is pizza. My best friends are Andrew, Daniel, and Josh.

I was born with dry skin. It is called lamellar ichthyosis. I use a special lotion with Aquaphor and lactic acid. I have to take a bath or shower two times a day. When I didn’t go to school in the morning, I liked to take a bath about all day. Now I get up early in the morning to take my shower so I’m not late for school. I have to brush my hair hard to get out any loose skin and I have to get out the tangles. After my shower, I do my lotions and brush my teeth and wash my glasses. I usually style my hair with my dad’s styling gel. After that, I put on my clothes, eat my breakfast, and get out the door.

This is me on the day I got out of the hospital. I was just 10 days old.

Wasn't I cute? You can still see part of the collodian on my fingers if you look really close.

• Mom's Notes on Bathing and Lotions

This is me when I was two. Sometimes, when it's really cold in the winter, my skin gets more dry. This is because the furnace runs so much and sometimes because it's windy outside. I have to do my lotions more often when this happens.

At school, I do my lotions in the office after lunch. I mostly just do my face and hands. Whenever you don’t do your lotions in between your fingers, it really gets cracked up and starts to bleed. I also do eye drops at school because when the skin gets over your eyes, you can hardly see.

• Mom's Notes on In-between Care

• Mom's Notes on School

I take a shower or a bath at night, too. I have fun. I use a pumice stone to rub my skin. I have my own shampoo. Sometimes it stings, but then it feels better. My mom puts oil on my head and uses the pumice stone and a metal comb to do my hair. I don’t really like it when she does my hair. After my bath, I do my lotions and put my pajamas on. Before I go to sleep, I have to have my eye drops. Sometimes I have ear drops, too. They fizz in my ear and then my mom uses tweezers to pull out the potatoes.

• Mom's Notes on Hair and Scalp Care

• Mom's Notes on Eyes and Ears

This is a picture of me when I was little. I was just being silly. I like to make people laugh.

Sometimes kids will ask you what happened to your skin. Dry skin isn’t contagious. If people ask you how’d you get that, you tell them that you were just born like that. When I was in first grade, kids asked me questions a lot. They asked, "what is that called?", "how did you get born like that?", "what is that?", and "does it hurt?". If someone says, "does it hurt?", I say no. Sometimes grownups ask me questions, too, like if I got sunburned.

• Mom's Notes on Emotional and Social Issues

A lot of people ask me questions. One kid called me "glue boy" in baseball, but I didn’t really pay attention. Usually, kids don’t call me names. They just ask me questions and I tell them, and they just say okay and do you want to play with us? I have a lot of friends at school and in the neighborhood. We play ghosts in the graveyard, war, sardines in a can, tag, and we ice skate on the ice when it’s winter. The thing I mostly like to do with my family are ice skate and go out to eat.

I mostly like to swim in the summer. When I swim a lot, I don’t have to take so many showers and baths at home. I use a lot of sunscreen so I won’t get sunburned. After I swim, I take my shower at the pool and put on my lotions before we go home. If I don’t put my lotions on right away, I have to take another shower when we get home. If you wait too long after your shower to do your lotions, your skin will get dry and then you have to start over.

• Mom's Notes on Physical Activities

• Mom's Notes on Clothing and Fabrics

When it’s really hot, I can’t always play outside. When I was little, my mom wouldn’t let me play outside and I would get mad. Now she lets me decide. When I get hot, I just come in. Two times I missed my baseball games last summer because it was too hot. If it was only sort of hot, my mom or dad would pour water on my head and my feet when our team was up to bat. If it was too hot, then I couldn’t go to the game. In gym, I can decide when I am too hot to play. When I’m hot, my face gets red and the top of my head hurts and my stomach feels like it’s bubbling inside. Then I just go somewhere where it’s cool or in gym, I just sit out, and then my body drops the hotness and goes back to the same way it was.

My mom thinks I’m wonderful.  

• Mom's Notes on Being Wonderful

Update:

This is me in 2006. I am now a sophomore in high school, supported by a great group of friends. I now have three brothers and two sisters but I'm still the only one in my family with ichthyosis. I still like to swim and, in fact, am earning all my high school PE credits by swimming. I still enjoy drawing and I also participate in Boy Scouts and a group that designs and builds electric cars. I play the baritone in our school band but during marching season, I am on the drum line so I don't have to worry about getting too hot marching. Life is good...   If you want to know more about being a teenager with ichthyosis, I highly recommend the DVD, Living with Ichthyosis: A Teenage Perspective, available from the Foundation for Ichthyosis and Related Skin Types. In this DVD, you can hear about ichthyosis from lots of teenagers (including me!) with various types of ichthyosis and many different experiences.