Jason’s Story

I am 29 years old and am currently being seen by a consultant at a local hospital. Hopefully he will sort out an appointment with an SM [systemic mastocytosis] specialist soon.

I first noticed the pink freckles appearing about 4 years ago and so went to the doctors where they told me it was acne. I knew they were wrong but didn’t pursue it any further. Then last year I decided the marks were getting worse and affecting my self-confidence so I went again and saw a different doctor. He told me he was sure it was capillaritis and he would refer me to a dermatologist for confirmation.

The dermatologist said it was urticaria pigmentosa, and after a bone marrow sample, skin biopsy and CT and ultrasound scans were carried out, the consultant diagnosed me with SM. I am going back to see the consultant, as it was a lot to take in at the time, and he was very negative. He told me that he has only experienced this disease with three other patients and they all survived 1 year!! Then said to avoid stress!!

[skin spots, urticaria pigmentosa, bone marrow biopsy, skin biopsy, systemic mastocytosis, SM, adult]