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.

Frequently Asked Questions - Page 2
Article Index
Frequently Asked Questions
Page 2
Page 3
All Pages

Will Oxygen help me live longer?

Yes it will, if it's decided that you need it. The criteria for providing long term oxygen therapy is quite complicated and requires that blood gasses are analysed. If it is decided that you need O2 then the company that has the contract for your area will work with the assessment team to establish your needs. Normally O2 therapy is for a minimum of 16 hours a day and is usually advised at night.

Is there anything I can do to help me preserve my lungs?

Well we know we should not smoke and that we should avoid infection. Try and be as healthy as you can and take exercise.

Should my family have the blood test for Alpha-1?

A difficult one. From a personal point of view we chose to have my partner tested rather than our son. As is usually the case this showed that my partner was normal, so we knew our son could only be a "carrier". It remains unclear what will happen in the future regarding insurance etc. Being a carrier is not thought to cause any problems without other risk factors. Insurance companies already ask about smoking and other serious illness so I don't think it will be a problem. However if there is any real concern that offspring may be PiZZ then it would be advantageous to find out. Remember having A1AD only predisposes toward COPD. Only a minority of lifetime non-smokers can expect real problems early in life.

I've heard that genetic disorders can "skip" a generation?

This is not so. You either have the faulty genes or you don't. In some "dominant" diseases like haemophilia the mutation can spontaneously occur at conception so that there is no previous family history of the disorder. This cannot occur with disorders like Alpha-1. But in societies that are very interbred there can be a high incidence of carriers coming together. A disorder that affects South Asians and some Arabs is Thalassemia. The frequency of this disorder is made higher by the common practice of cousins marrying. This no longer occurs in our society so the risks of coming across another "carrier" is quite high, probably somewhere between 1:25 and 1:40 depending on where you live in the UK. Scotland, Ireland and the north of England are likely to have higher rates than the west country.