RE Alpha Trypsin Awareness Self Help site

[barneythebulldog]

I have read a lot of the comments and I'm wondering if any of you were tested for Alpha Trypsin deficiency as some of you had asthma as children and the World Health Organisations now advocates that everyone who presents with asthma or cold should be tested..my doctor didn't want to but I insisted as it is a genetic disease linked to many other symptoms apart from lung and liver.

Please feedback any comments as we are trying to get the government to focus on prevention strategies as these are all we have. There is no cure..

[hopetorun]

Hi

I have had asthma from the age of two so did my mother. I am now 54 and was finally tested last year and came back positive.

[Hidden]

Hi,

Thanks for this, very interesting. I have had asthma from a young age, well controlled as an adult (I'm now 42). 3 1/2 years ago I had a virus, which caused a chest infection and then scans etc have shown scarring/damage/thickening in the lungs and as an added bonus I had clots in my lungs last year. I am very restricted in mobility etc because of the breathlessness now and am on maximum medication. On some admissions I'm told COPD but I have never smoked but I know from previous reading that alpha trypsin deficient COPD is not linked to smoking. I think I'll push my consultant at the next appointment as when I asked a year or so ago he said testing wasn't needed.

Thanks,

Victoria

[Parvati]

Their are two excellent Alpha patient groups in the UK with patients and their families raising funds and awareness as well as being politically active here in the UK, at European level and worlwide. They provide literature both for the patient and their family, as well as to pass on to GP's and other clinicians to improve their understanding and awareness. They have active groups on facebook as well as the web sites below;

alpha1.org.uk/

alpha1awareness.org.uk/

[Hidden]

hi Barny, The QE in Bham is one of the centres for A1A Antitrypsin research. As it can often result in bronchiectasis I was tested as a matter of course. I did not have it. As it is a genetic condition those who test positive are urged to encourage their family to be tested. The major danger for those who have it is smoking as the damage caused is faster, more intense and irreversible. If you are concerned insist that your GP refers you to one of the study centres. This is not something that a GP alone can deal with. Good luck

[Hidden in reply to Hidden]

A GP alone can carry out the routine blood test for A1AD without referring a study centre ask your GP should there be any suspicion of this hereditary genetic defect.

[Giaco1]

I am an Alpha 1 with COPD, EMPHZEMZA

[hopetorun]

Hi Victoria they did not discover this problem until the mid sixties so due to the small number of people thought to suffer and the lack of understanding very little research has been done until the last 20 years. In the most serious cases they can give you a substitute chemical to make for the lack of chemical produced by the liver. ( it does not make significant difference only in a few people)

My mother never smoked either and my brother died of Liver disease so it does make you wonder if this is the cause.

I think the more people who are tested they will discover there are far more people who have this then maybe they will do more research.

It only takes a blood test to find out so why not ask for it to be done.

good luck Irene