Michelle's story

I was born with several 'birthmarks' mostly on my thighs and diagnosed with Urticaria Pigmentosa several years later, but not before various doctors informed my parents the spots were anything from flea bites to chicken pox. I had an anaphylactic reaction to a bee sting when I was 10 years old and nearly died, not realising that UP could involve anaphylaxis. It is important to note that I have only had the one anaphylactic reaction so the message to parents of UP kids to "be alert, not alarmed" and be prepared but don't wrap them in cotton wool.

I was diagnosed with SM (Systemic Mastocytosis) via bone marrow biopsy in my 20's. I'm now in my early 30's and still have the UP spots and they have spread to my lower legs, upper arms, trunk, etc, with face spared. I'M still holding out hope that one day they will miraculously disappear!!! I did have gastric issues in my 20's which settled down with Zantac over several years. Now I'm not on any medications but just aware of my triggers, e.g. sunlight/heat/pressure will cause flushing or hives.

In hindsight, masto hasn't really impacted my life all that much except for an aversion to being seen in a bathing suit, but it is good for parents of kids with UP to be aware that they may have anaphylaxis without other SM symptoms and they should know appropriate first aid just in case, and be on the look out for symptoms should they have a sting or similar. This is a very individual disease but I am happy to answer any questions about growing up with Masto from concerned parents, etc.

I would also like to hear about others results of cosmetic and other treatment for UP & SM, such as IPL or other laser treatments.

All the best,

Michelle