Carla and Family’s Story
I have two boys with mastocytosis, Alex 12 years old has Systemic Mastocytosis and was diagnosed at the age of two. He has an enlarged liver and spleen and a low platelet count. By the age of three and a half he was also diagnosed with an Immune Deficiency with a sub group IgA and IgG deficiency. He receives gamma globulin weekly to top up his immune system, we do this at home with the community nurse. Alex suffers with migraine headaches and also histamine headaches. He was diagnosed last year with Bronchiectasis which affects his lungs, he often gets pneumonia which makes the Bronchiectasis worse. His spots are not typical of masto spots and he was recently diagnosed with Histiocytosis through a skin biopsy. He attends regular school and is managing to keep up with his peers even though his attendance is lower than average. Alex attends one hospital for his lungs and immune deficiency and another for his masto.
Leon is almost 11 years old and was diagnosed with Cutaneous Mastocytosis when he was 6 months old, he had the typical masto spots on his back but only a couple, he has dermographism [dermatographic urticaria] and also has psoriasis. He has mainly suffered with skin problems although his masto spots have gone, he also suffers with croup which he should have grown out of by now. Apart from that he is doing really well and the doctors are suggesting he has grown out of the masto. Leon attends the local hospital.
I have two other children, Jeremy 18 years old has Diabetes type 1 and Hypothyroidism, and Stephen 28 years old who was diagnosed with Fibrodysplasia 5 years ago.
We previously lived in Holland where all the children were born and moved back to the UK in August 2003.
[systemic mastocytosis, immune deficiency, headaches, bronchiectasis, skin spots, histiocytosis, cutaneous mastocytosis, dermatographic urticaria, psoriasis, child]