i just wan't to say a big thank you for starting this site , i have found it very useful and informative .
I will tell my story but try and keep it shortish , though thats quite difficult compressing 22 years of ones life into a few lines , I'm a long term survivor of HIV/AIDS I was diagnosed when i was 25 in 1986 which seems like a lifetime ago , and i can hardly remember a time when i wasn't HIV +
If i cold have chosen a different life then i certainly would have done , i would really like to think it hasn't controlled my life , but deep down i know it has .
I was awarded DLA in 1996 with probably about six months to live i had a very low CD4 count and a lot of KS lesions on my body amongst other infections , at this point i was still working (3 days a week ) god knows how, i used to fall asleep at work on a regular basis .
it was around that time that i started on the endless drug trials which of course i remain on to this day , my blood counts became better and i continued working until 2001 when even though my my CD4 count was reasonably high and my viral load non detectable i got another AIDS defining illness just to beat me back down again , after being miss diagnosed with tonsillitis for 4 months and endless amounts of antibiotics i was seen as an emergency patient at st thomas
where i was diagnosed with non hodgkins lymphoma (cancer) they gave me a 25 % chance of survival and i had chemotherapy for a year at this point i had to stop work and have not worked since . i was a very successfull hairdresser and got to the top of my profession having had to have a year off
i count on my DLA to live on these days along with income support and i'm not sure how i'll manage without it my doctor was very understanding when i told him about the review and told me to write my own letter and in explaining my condition /disability and how it effects me etc . i don't think the "decision maker" should base his decision on blood counts because they certainly have had little bearing on the infections and illness's i personally have had .
i was once told by a leading HIV doctor that your immune system isn't the same once its been compromised
just to say thanks for reading this , hope the spelling wasn't to dreadful
i await the brown envelope
mark1
