Kirsten and daughter Maya’s Story

Maya, who has had UP [urticaria pigmentosa] since about 3 months, is now doing really well at 11, she has recently been getting better and better. As I have often said to other parents – there was an improvement in Maria’s Masto from when she was 3 – 4 but it was then very gradual, now there is such a huge difference to how she was even a few years ago.

Maya’s lesions are very good by comparison and the marks on her arms are hard to see now. Maya never had medical photographs so we cannot get a true comparison but they do look very pale on her arms.

Maya’s Story (in her own words)

My name is Maya and I am 8 years old. The type of Mastocytosis I have got is Urticaria Pigmentosa. I have had Urticaria Pigmentosa since I was a baby.

I have got dots all over me that stay all the time. When I get hot or cold I get itchy rashes all over me as well that feel like they burn inside and outside. When I scratch them they get bigger and bleed and it really stings. I have cream for my skin when it gets sore but sometimes my skin is too sore to put it on.

When I cry it makes my tummy sore. Some chocolate and some sweets make me very sick and give me a bad tummy. When I get hot it makes me feel sick and it makes my throat burn. Sometimes my legs hurt so much it makes my bones in my legs and feet really sore and feel very heavy.

It annoys me because other people get to do things I can’t because I would get too hot or cold. A lot of clothes itch me so I feel the inside of my clothes before I buy them. When I get sore at school it is really hard to concentrate.

I wanted to meet another girl with the same skin as me. Then I found this group and met 2 girls and lots of other people the same as me. When I don’t feel well they don’t ask me why because they know what I mean. The people in the group don’t say that you have got chickenpox or make fun of me like other people I know. I like being in the group because nobody makes fun of me when I see them and they understand how I feel.

[urticaria pigmentosa, UP, skin spots, reaction to temperature change, food intolerance, child]