I am not going into massive detail but basically over the last year or so I have been sort of unwell. though have continued to work all the time as in some strange way I am driven to work (probably too much) but working is almost as an important a part of my life as surfing, (with family top of the list).
I have had all sorts of hospital investigations from MRI scans, CT scans even been injected with nuclear material in my back to try and find out what the problems where. it seems now that I have a full diagnosis, I hadn't imagined it all. I have a quite rare genetic problem that can now be treated, so I am on disease modification therapy (developed first for children with the same thing) that will hopefully make be much better, had I had this condition even 20 years ago I would probably not have lasted through to old age, and certainly would not be able to work or go surfing!
it all sounds terribly dramatic but to be fair there are many millions of people in the world who are in a very much worse position than me. jeans for genes is specifically set up to help children with genetic problems from sickle cell anaemia to deafness caused by a miss match of genes and a whole lot of other stuff in between. hopefully they should be able to be helped through the research that the 'jeans for genes' charity do.
what is jeans for genes?it's fun, it's simple and it's a great cause! jeans for genes is a national appeal where everyone across the UK is asked to throw out the usual dress rules, jump into their jeans and donate £1 at schools or £2 at work to help children with genetic disorders. jeans for genes day 2007 will be held on friday 5th october, but if you can't make this date simply pick another – you can hold your fundraising activity on any day of the year!
No comments:
Post a Comment