My Story John Doyle
Born 17/01/1944
It all started in infancy when I was diagnosed as having a weak chest, which was later to be labelled as ‘asthmatic’!
Throughout my childhood I was plagued with chest infections, and to add insult to
injury I also suffered with Eczema, it seemed that when my chest was good my skin
was bad and vice-
I was always seeing either the skin or chest specialist: although I was told that I would grow out of it all when I became a teenager: it didn’t happen!
After many years of intensive treatment my eczema improved but it has left me with a very dry skin condition which needs constant attention.
My chest condition however became much worse as the years progressed; I had been taking steroids on and off since my late teens plus various inhalers, in fact every time something new came out I would be amongst the first to try it out: for all this my condition was never manageable or controlled satisfactorily.
As a teenager I took up smoking, it was very vogue in the sixties; little did I know the damaging effect that it would have on my health, especially my lungs. However I did manage to stop smoking when I was forty, but I guess the damage was already done!
I always managed to work for a living, latterly as a surveyor for a large national company and covered an area which took in the whole of Devon and Cornwall, Somerset, and Wiltshire, Avon and Gloucestershire; right up until July 1992, this is when I experienced extreme difficulties with my breathing. My chest consultant told me that I had developed emphysema due to smoking even though I hadn’t smoked since 1984.
Hospital admissions became more and more frequent, being as many as 10 times through the Winter months : my consultant started to show some concern and asked a colleague to give a second opinion, he said that there was nothing wrong with me and referred me to a clinical psychologist, who after three visits discharged me!
So it was back to the drawing board so to speak for my consultant who stood perplexed as to what was ailing me.
However in September 1998 on one of my many frequent visits to my GP’s surgery I got talking to one of the practice nurses who was concerned at the way my health was deteriorating, she asked if I had ever had an enzyme test, I said no: so without further ado she spoke with my GP and an enzyme test was organised.
Up-
The result came back in around 6 weeks and showed that I was a gene short and I was diagnosed as having Alpha 1 Antitrypsin deficiency the next most common genetic deficiency after cystic fibrosis,
.
This put a whole new light on my prognosis.
