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

green and purple badge 1

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.


D
isclaime
r

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.

What Are The Risks Of Getting Sick? - Part Three
Article Index
What Are The Risks Of Getting Sick?
Part Two
Part Three
Part Four
All Pages

Exercise

What happens is that a person does less because they don't like getting short of breath (SOB). So, they do less. Their muscles start to waste away and because of this they get even more sob when trying to do anything. This is the spiral of de-conditioning and over a few years this can have a dramatic effect on that persons well being and fitness. The only way to break this downward trend and to reverse the process is exercise.

If you don't have access to a pulmonary rehab group then start campaigning to get one at your local hospital. These courses usually last around eight weeks and consist of gentle exercise routines, combined with education about the best way to manage your symptoms and disease.

Being empowered to "own" your disease is important and can bring renewed confidence.
If you are overweight you'll be surprised at how losing a few stone can help your breathing as you now don't need to lug that weight around and keep it all oxygenated!

Carriers and illness.

In the vast majority of cases people who have one normal, and one abnormal gene for A1AD stay perfectly healthy and live their lives never even knowing that they are PiMZ ( or PiMS)

A fairly recent long term study was published in Denmark. The research was aimed at looking at the risk of "carriers" developing lung disease. The study lasted for over twenty years and attempted to quantify the risks, if any to PiMZ individuals.

The authors concluded that if the risk of COPD in the whole population was "1" then the risk to MZ's was "1.5". At first glance this appears to show that MZ's have half as much chance again than people with normal AAT. In fact, as the authors point out, as the risk to the general population is small then the risk to an individual who is MZ is also very small.

The same study, using the same benchmarks, says the risk of COPD in PiZZ's as "12".

Other studies have made similar conclusions that having lower levels of AAT do not in themselves cause a risk. But add smoking, asthma and other unknown factors and the risk to MZ's is higher than for MM's.

Dr Jack Lieberman, an early pioneering researcher into MZ's and disease said that he had never seen a PiMZ patient who had emphysema and had never smoked. In fact there are a small number, and indeed there is also a tiny number of people with normal AAT who also have never smoked and have emphysema. They just haven't yet figured out why!

A recent report from the US concludes that being PiMZ does not increase the risk of liver disease, and that liver disease was no more frequent in that phenotype than in PiMM individuals.

Of course, both lung and liver diseases are common in the general population. But generally, the good news is if you don't smoke and have children or relatives that are PiMZ then the overwhelming chances are that they will remain in good health.