Mailing List

By joining the Alpha1-UK Mailing List you will be in contact with some 160 affected Alpha patients, and their families, living throughout the UK. We are a friendly group, and between us we have a wealth of knowledge and experience to share. There is always someone to help with any worries or queries you might have. If you would like to join us then please click Here Or, if you would like any further information then our Webmaster will be happy to help.

New Alpha1 Support Group Badges
Now Available

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The smart enamel badge, shown above can be obtained from John Doyle at a cost of £1.00 each + £1.50 p&p (for up to 30 badges) The size of the badge is 16mm x 28mm (butterfly fastening) 

Click
Here to place an order.


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The information provided is for educational purposes only and is not intended nor implied to be a substitute for professional medical advice.Always consult your own physician or healthcare provider with any questions you may have regarding a medical condition.

Frequently Asked Questions
Article Index
Frequently Asked Questions
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If my body doesn't make AAT can't I be given a pill to replace it?

Unfortunately not, for nearly 20 years in the US, AAT has been replaced by a weekly IV infusion of AAT that has been collected from human blood donations.This is an extremely expensive "treatment" that costs up to 100,000 USD a year per patient.There have been no trials that have shown that this works in slowing down the damage to the lungs.This doesn't mean it doesn't do that, but that it hasn't yet been shown to do so.

A suitable trial is now finally underway at the ADAPT project in Birmingham (England) and should report sometime in 2006.

I've just been diagnosed with A1AD related COPD and I'm frightened.
How can I know how long I have left?

This is an understandable question and one we hear frequently. It's not possible to give the sort of answer that most people would like but there are some factors that might be helpful in re-assuring you. If you are diagnosed early and have good lung function you should be good for many years if you look after yourself.

Sometimes I get so short of breath that I feel frightened that I'm going to die!

Getting short of breath (SOB) can indeed be very frightening indeed. However, unless you also have heart problems it is unlikely to cause any lasting damage, even if it feels like you are going to keel over.

Usually we develop strategies that tend to avoid the triggers for attacks of breathlessness. Most people with COPD have difficulty bending over to do things like, cleaning the bath. The difficulty is caused by the oversized lungs squashing down on the diaphragm. So, you find another way of doing things or, get someone else to do them! Many people find that it helps to stand leaning slightly forward, resting elbows on a surface like a windowsill, or banister rail.

We all know that it helps to breathe through pursed lips when being SOB as this helps to produce a back pressure that tends to keep the airways open.However, all this is well and good but we all have moments where we lose control of a situation and end up with a serious "oxygen debt".

Here's another tip: Try not to blow out to hard, even though your body is saying blow, blow blow. If you blow off too much carbon dioxide it'll make you feel incredibly panicky, making you want to breathe in harder.Try to be calm and know that this will pass and you will be back to your "normal", within a few minutes.