AATD or Alpha-1 Antitrypsin Deficiency is a lack of the protein alpha-1 antitrypsin (AAT) which is produced in the liver. The main job of AAT is to protect the lungs. A deficiency can lead to life-threatening lung and/or liver disease.
The first signs and symptoms of lung disease caused by alpha-1 antitrypsin deficiency usually appear between ages 20 and 50.
The symptoms are:
- shortness of breath following mild activity
- reduced ability to exercise
About ten percent of infants with the deficiency show signs of liver damage at birth. Fifteen percent of adult Alphas also develop liver disease.
Only a small fraction of alpha-1 antitrypsin deficient patients in the United Kingdom are aware of the causes of their condition.
This website was created so that people can learn more about Alpha-1 and how to get support. While we have taken offline all of the different booklets and leaflets, we still have a private Facebook Group where we help to support people in a safe environment.
If you have come across this site as you are newly diagnosed and you are looking for information about Alpha-1, you have come to the right place. To understand more about Alpha-1, click here. There are some great videos on YouTube giving more information which can be found here.
Take a look at the different menus above as they contain a wealth of information which hopefully you will find very helpful.
Charity to close
16th September 2021
After much debate and a considerable amount of time and thought, it is with great sadness we must announce that the Alpha-1 Awareness charity will not be continuing. As of the 26th September 2021 we will be dissolving.
We would like to thank all fundraisers and supporters who have helped raise money for this charity whether it be large or small. All the remaining charity funds has gone towards research in the hope to find that illusive cure.
The Facebook group will remain (it can be found here: https://www.facebook.com/groups/alpha1awarenessuk), so that those newly diagnosed can still get support from fellow Alphas from around the World.
We are truly sorry that we had to let the charity close, it is a sad end of an era. Please know that our booklets are still here so you can download them to better understand the condition and how you, your family member, friend or even child could be affected and how best to support them.