Oklahoma Mastocytosis Society - Our Stories





This is a story about Paul, written by his mother, Anne.  Paul is a young child from England. Mastocytosis is a disease that can strike anywhere, any time, and at any age.

Please let me introduce you to my son Paul.  I hope his story will give hope to the parents of other young babies and children experiencing what he went through when he was very young.

Paul was diagnosed with Diffuse cutaneous Mastocytosis when he was only 8 weeks old.  He suffered terribly from blistering and bleeding when he was a baby, as the photograph shows.  He had to have half a kidney removed when he was 8 months old (unconnected with the DCM), and analysis of the tissue and later bone marrow biopsies showed that he also had Systemic Mastocytosis.  He was very severely affected during his early years, and we were sure that he would not survive long enough to go to school.  He was very small, and terribly underweight, but was a extremely happy baby, despite what he had to go through.

During his second year, a decision was made to try him on Alpha Interferon, which at that time had never been tried on a Mastocytosis patient.  It immediately had a beneficial effect on his white cell count, which at that time was sky high, and it continued to help, normalize his blood counts for the rest of the time he was on it (I think about 9 months). 

The blistering gradually subsided, and now he only blisters if he bumps his head.  He still continues to bleed after he cuts his head, sometimes for up to 36 hours, but on the whole he leads a fairly normal life.  He does attend a Special School, where they give him the extra attention he needs, and they keep an Epi-pen in case of bee stings, although they’ve never yet needed to use it!

His biggest problem is that his skin has developed spontaneous keloid scarring, strangely in the places that were least affected by the blistering.  His arms and legs look as if they have been very badly burnt, and he sometimes has big problems coping with this.  The children at the school he goes to are very understanding, they of course all have problems of their own and they all look out for each other. 

I hope that people will look at the two photos of my lad and realize that sometimes things do get better, sometimes far better than you could ever have imagined.



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