I am going to be doing GENE THERAPY TRIALS
Unfortunately ive been told that I will not be allowed to tell anyone about how im doing on these trials and how im feeling but i am allowed to tell you im doing the trials and I couldnt be happier.
In short Gene therapy isnt just a treatment, it is hopeful that Gene therapy could be the potential CURE of cystic fibrosis. That may sound like a massive overstatement but that is the end result that researchers are aiming for and Im hopefully going to be part of that historic process
Now that sort of tells you why I feel so priviledged and honoured to have been asked to do these trials.
To try an explain gene therapy without boring you this is basically how it will/should work. I have taken an insert from a website which explains how it will work in short
Many diseases such as cystic fibrosis, are caused by faulty genes.
Gene therapy involves the addition of a healthy,
working copy of the gene into appropriate cells in the body to replace
or override the faulty copy present in the genome.
Unlike most conventional medicines, instead of
treating the symptoms of a disease, gene therapy has the potential to
correct the underlying cause.
As far as im aware it is aimed at helping the lungs as the first step but that in itself will be life changing for a cf sufferer as it will change so much in terms of life quality, fitness, medication and overall wellbeing.
Of course there are always risks involved with participating in such trials but I have said ever since i first heard about gene therapy that I wanted to try and get on the trials and help out in anyway I could. The risks do not worry or scare me because the rewards will be potentially so HUGE.
I could not turn this opportunity down I had to say yes straightaway and today is my first step into starting the trials and maybe changing my life forever.
The trials work like many normal drugs trials so I have a 50/50 chance of being given the real gene therapy drug or the placebo. But I dont care 50% chance is better than no chance.
I am booked to go and visit the team within the next few weeks and have an operation. Im not sure if I can say what it is the operation is for but I will say that its an important part of the trials.
I am sorry that I cannot blog about how I get on but will update as best I can without breaking the rules.
I can say that this is not a short term Trial. I will be involved for nearly 14-15 months doing various things and the odd operation or two.
But for me the time im asked to give up is of little importance, I have said since day one of knowing about gene therapy Id give my life if it meant I had a chance I could come out the otherside a healthier and am very happy I may have the chance to give CF a proper kicking. If it works more importantly I could have a longer chance to enjoy the important things I have in my life and I cant give up the chance to possibly live longer.
For someone like me its like winning the lottery because it will be life changing if it works.
I once told someone who was fed up of CF and living with it :-
"Why live a hard life of fighting if you dont believe your fighting for something better?
That is why I will doing anything to fight CF because I believe im fighting for something better.
And to the person(s) who put my name down for the trials I Thank you, you just dont know how much you may change my life in the near future.
