I am Belinda, and I have been ill throughout my life (now we have realized that it was mastocytosis but hadn’t been aggravated like now). In summer 2004 I became really ill. My year was full of stress and anxiety and very hectic. My parents had split up in the new year, I had a boyfriend who was very manipulating, I had just started my GCSEs, I was teaching trampolining in the holidays, I also did loads of things after school, windband, brassband, helping at my local Brownies and going on trips etc that they had organised. When I became ill I was at a camp I go to every year. I became very tired, not hungry and had a sore throat. After a month of me feeling like that we went to the hospital where, after doing a series of routine blood tests they said it was in my head. But me and mum knew it wasn’t. So we saw a different doctor who referred me to a children’s hospital and there I was diagnosed with fibromyalgia. I was having worse reactions to foods and tummy pains and I was throwing up more often and had a rash on my back, back pain and joint pain. So my mum was able to get me referred to another hospital. There they did loads more tests which came back normal (MRI, CT, barium meal, X-ray).
Eventually I was referred to an allergy specialist in the children’s hospital there he tested my blood for different allergies to food. Also he did a test to see if I was an allergic type person, apparently I’m not but my tryptase levels were significantly increased. We then went back and I had my bloods re-done and they were still raised. Then my doctor said I have systemic mastocytosis. I did a food diary for foods that I can’t eat, unfortunately there are loads! Some were hard to pin-point so I went on a few food diet. Anaphylactic shocks now seem to be quite regular, with yeast I don’t even have to be eating the food and I react badly to it. Also chocolate seems to send me into shock. In 2007 alone I had at least 6 shocks resulting in hospitalisation. I still suffer with tiredness, tummy aches, the big ‘D’ [diarrhoea], sickness, joint and bone pain, itchiness and rash on my back. But the medicines I’m on have helped a lot. I now see a doctor in a local hospital. At first my college were really good with my illness, but in the second year they struggled to cope, partly because I was reacting more and I had been partially paralysed from a shock and was fainting. I am doing a BTEC ND in health studies and hope to become a dietician.
I am doing my course over three years instead of two. I’ve started up brass band and driving lessons. I receive disability living allowance (DLA) but it was a long struggle to get it and many people don’t receive it because mastocytosis is not recognised. I’m also waiting to see a specialist in this condition.
[tryptase, SM, systemic mastocytosis, food intolerance, anaphylaxis, bone and joint pain, gastrointestinal symptoms, DLA, adult]