Jessica and son Austin’s Story

My son Austin (21 months) was diagnosed with UP [urticaria pigmentosa], I noticed red/brown patches on his back from about 6 weeks old and mentioned it to my health visitor – she told me it was eczema; I then spoke to a GP and they said the same, so I left it. I then took Austin to our GP for an ear infection in the summer and he asked me about the brown patches on his head, so I then showed him his back and tummy, he then referred me to the hospital where a consultant told us he thought it was cutaneous mastocytosis. He then referred us to another hospital where he saw a doctor who then confirmed he had UP as he showed the obvious Darier’s Signs (blistering).

Austin was induced and had horrible skin at birth as it was extremely scaly and bled, we were told it was because he was late but maybe it was CM [cutaneous mastocytosis] – I don’t know, so it is hard to know whether he was born with it or just got it very early in life.

He has also had bowel problems for as long as I can remember, so has now been referred to a Gastro Consultant at another hospital, the consultant also wants him to have a spleen and liver scan and some blood tests done. I was desperate to try and find out more about the disease as my GP knew nothing, so that is when I started searching on the internet and found the site in USA, where they referred me to the UK support group.

[urticaria pigmentosa, UP, skin spots, skin blisters, cutaneous mastocytosis, gastrointestinal symptoms, child]