I am 49 years old and was diagnosed with Mastocytosis at the age of 16. I have extensive UP, covering most of my body except my face and I have some systemic symptoms – like enlarged liver and spleen. The only adverse side-effects I have is that I do have reactions to anything alcoholic (although I do keep trying!).
I take no medications, very seldom see a doctor and live a normal lifestyle. I have never tried to hide my spots and can still be seen strutting on the beach in my costume!
My one claim to fame (or so I have been told) is that I am possibly the only person in the world who has confirmed UP and SM, that has run and completed a marathon and an Ultra Marathon (60 miles). I have run a total of over 75 marathons and ultra-marathons in the past 15 years. My running has taken a bit of a dip in this past year since moving here with all the extra commuting time and weather restrictions, but I do manage to get out every now and then.
[systemic mastocytosis, SM, urticaria pigmentosa, UP, alcohol intolerance, adult]