Voor de verandering eens een brief die een tipje oplicht van mijn ‘andere’ leven, leven met een stofwisselingsstoornis. Een leven dat zich hoofdzakelijk in het Engels afspeelt, aangezien er in België amper mensen zijn met dezelfde aandoening (of ze hebben een verstandelijke beperking).

 

To the International Organization for Hypoparathyroidism

Branch Hypoparathyroidism United Kingdom

London

 

Dear James,

Dear Liz,

 

Thank you very much for your kind letter and your appreciation.

 

I found out about your organization thanks to one of my friends who asked for me on the newsgroup Belgium.Soc.Handicap whether there existed information sources on how long people with Hpth could live, and in what conditions. I must admit I was baffled by the professionalism and enthusiasm it showed.

It seems to me there is very little known here in Belgium on Hypoparathyroidism (Hpth). Especially the long-term prospects interest me. When I was younger, it looked as if I would die when I was 23. This didn’t happen and until now no one knows what is going to happen.

I was initially diagnosed as ‘retarded’, some rare equivalent of some syndrome in the down-family. Only after a non-academic doctor could diagnose my disease when I was six, my mental and physical capacities slowly grew to what is called ‘normal’.

My parents always thought of me as a ‘normal’ child, while all others – so it seemed to me – did just the opposite.

Although I couldn’t speak well until my twelfth birthday, I’ve managed in my twenties to perform poetry and drama, write essays and prose, and get two bachelor degrees (management and library science). I’ve found much comfort in the arts, in dancing (which I like much) and in mysticism.

I am now a Social Worker working as a semi-volunteer in non profit-organizations with people with autism and all kinds of other disorders.

I have a personal assistant who gives therapy and tries to find a job for me, and motivates me to keep on going. She’s a great person. As a therapist she’s necessary as I suffer a lot of depressions. I have considered many times suicide. I’ve done several jobs though every time I felt not accepted or could not do the jobs due to my disorder, which employers think of as a disease.

My medication is very limited, I only take One Alpha Leo, Lthyrone, Pulmicort and some antidepressivum called Effexor. The first three medicines I take since my sixth birthday. I regularly visit the hospital for blood tests but nothing much happens (luckily). They say there are other medications, though I don’t like to change.

According to the doctors that support me, I am the only man (a few years ago) and there is only one woman who has the disorder in Belgium. I don’t know if this is true. I personally think there are three of four members in Belgium. I recall you said it was a surprise to see a diagnosis of idiopathic hypoparathyroidism in 1976. I have already had tests on the passing of the disorder to my children, en according to the centre for human genetics it seems not the case.

It would be an honor to write about my experiences, and especially get into contact with other people, all over the world, and of course in my own country. I will try to keep it as much to the point as possible and write as fast as I can, though I can’t promise I’ll meet any deadline.

Writing about yourself is really much harder than I thought and than writing an essay on a seventeenth century painter. I have read some of the contributions, which I thought, as someone who writes himself a lot, were very well done. I will also try to find a scanner and a suitable photo.

Since there are so few members I have no problems anymore to be listed with my e-mail address. In the meanwhile, I hope my English was not that bad, and I will leave you for now, and since the sun shines here at the Belgian coast, I’ll enjoy of it while I can.

 

Best wishes,

 

Martijn Christiaen

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