Emailed to me for inclusion here this can also be found at http://mark1-hivdla.blogspot.com/
"To everybody who may find this interesting or indeed helpful
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"
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3 comments:
Thank you for this. You raise many issues. Toxicity from earlier drugs. That the CD4 count being relied on is not a reflection of the whole picture. It is accepted that HIV is visible in the blood but that represents a small percentage of it's prevalence in the body. HIV also lives in all other tissues & organs and is not measured. Also it is still current thinking and the new BHIVA guidelines refer to a level of CD4 of 350 as being the start of treatment to avoid long term damage to the immune system. This figure also subject to other key indicators such as viral load, age etc. In fact you would be encouraged to start treatment if your viral load is very high.
Regards,
John.
just to update on my original blog i gave the DLA decision makers the name of my consultant at st thomas they now wan't to write to my GP for a medical report
i have seen my GP about twice in ten years , and feel she knows nothing of my condition , i now more than ever feel this is most unfair .
any comments or help on this would be most welcome
http://www.dwp.gov.uk/medical/med_conditions/hiv-aids/sources_of_ev_hiv_aids.asp
This is the link to the DWP's OWN guidance.
They may want to approach your GP because there is generally a backlog and many outstanding medical reports from HIV Clinicians.
Ring them and quote there own criteria back at them.
Hope this helps. I will see if I can find somemore information on this.
John.
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