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urticaria pigmentosa/mastocytosis

K

Message 8 of 14 Previous Next



I have Urticaria Pigmentosa myself for 5 years now and I am 20 years old. It has increased and now I am going to a dermatologist. It is a fact that they just don't know much about it because it is so unknown and rare. They say it can get worse but also cannot, the sun doesn't have any influence on it. It is important to go to a doctor who knows what it is and look at the treatments etc. My dermatologist said that I should first try laser therapy which isn't usually used on people with urticaria pigmentosa. This happen to have a little effect on the spots, they get a little lighter. But we don't know if it is permanent but it is a little hope. I have now 4 spots lasered and in two weeks they will laser my arms and chest. I will let you know the results if you like. Because it is something so less people have I understand that patients feel lonely and down sometimes just like myself. I would really appreciate it if we can keep contact to talk about the progress of urticaria pigmentosa. I hope I informed you a little bit about it but I can't tell you a lot either because it is so rare, we just have to wait and see how it progresses and what happens which is quite frustrating. And don't believe anything that you read on the internet because it scares you unnecessarily. Lots of the information is not based on facts. greetings Reina Krouwel from Holland Hope to hear from you soon.

 


   
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