Stella’s Story

I first noticed my UP in about ‘99 – after numerous visits to the GPs I decided I would like them to refer me. I eventually saw a Dermatologist in March 2004, she biopsied me and couldn’t be certain what I had so I was then seen at the local hospital. After some discussion amongst the various consultants and professors they diagnosed UP. My dermatologist then said that I was her first patient like this and that I should have a blood test and base line DEXA scan. After 6 months of waiting for the said blood test and scan I reminded her I was still waiting and she had forgotten! Anyway, the blood test in November 2004 showed raised tryptase. The bone scan in January 2005 showed severe osteopenia. I was then referred to a consultant in metabolic bone disorders at another hospital re the osteopenia and he put me on bisphosphonates. He then asked if he could refer me to a Professor so I went to see one of his research students who did a bone marrow biopsy there and then! The results showed abnormal bone marrow. I am a candidate for the AMN107 [nilotinib] trial.

[UP, urticaria pigmentosa, tryptase, osteopenia, bone marrow biopsy, DEXA scan, adult]