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, and
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.
On the 24th April Michelle Kendall completed the London Marathon and raised an astounding £1,058.94 for our charity. We are very thankful for all the hard work not only running the marathon, but the training she had to do for it. We know Jackie and Andi are very proud.
Have you been inspired by Michelle, running the London Marathon, on behalf of our Charity, do you or a family member or friend want to do a run to raise funds for Alpha 1 Awareness UK ? Now is your chance, we have places available for the BRITISH 10k RUN, in London on the Sunday 10th July, it is always a great day and not too strenuous a run, it takes in a lot of London’s landmark sites. If you want more information, please contact our treasurer Jeff Darkins at firstname.lastname@example.org, or myself, Lin Daniels at email@example.com, we have 5 places to fill, so please ask around your family and friends, we look forward to hearing from you
We thank all fundraisers for their efforts in raising awareness of Alpha-1 and helping us maintain the charity. If you are doing an event or know somebody who is, please let us know so we can mention them here as well as on our Facebook group and Twitter.
Help for Alphas with Travel Insurance
Dear Alpha – 1 Awareness UK,
We are delighted to report that we continually have encouraging response from many patients and their families who have been referred to us for travel insurance advice via various organisations such as Macmillan, British Heart foundation & Major hospitals, and many others. Please visit our website www.jdtravelinsurance.co.uk
JD Travel has spent more than 30 years arranging quality travel insurance at competitive prices for people who have had difficulty in obtaining adequate cover due to all types of pre existing medical conditions and disabilities.
Benefits of using JD Travel Insurance:
Every application is dealt with on an individual and confidential basis.
- No upper-age limits for single trip travel insurance;
- European & Worldwide coverage and medical assistance;
- Full cover for claims arising from pre-existing medical conditions;
- The most competitive rates for single trip and annual multi-trip policies;
- Information about local health care facilities in all destinations;
- A knowledgeable team with many years of experience in this field.
If you would like us to send you some of our leaflets to distribute, please contact us by telephone on 0344 2474749 or email and we will arrange for some to be posted to you immediately.
Early phase study into AATD
Would you consider taking part in an early phase Clinical Trial?
The Queen Elizabeth Hospital in Birmingham is running a phase I clinical trial to determine whether a new investigational drug could help to prevent liver damage by reducing the liver damaging Z-AAT protein. The trial is recruiting patients who have limited lung and liver disease and has 8 study visits over 3 months including a 2 night in-patient stay. Patients will be reimbursed for their time and travel expenses.
If you would like to hear more about the trial the please contact Anita Pye on telephone: 0121 371 3886
This study has been reviewed and approved by a research ethic committee. Ref#15/SS/0109
Version 1.0 dated 4Jan2016
Online Charity Shop
Buy Alpha-1 Awareness UK-branded items and raise charity funds.
Follow the link at the top of this page or go to our online charity shop at www.alpha1shop.org.uk – where you can purchase all kinds of fabulous gifts, handy everyday items, stylish clothing and shopping bags, Christmas cards and other essentials that will help further the cause of AATD awareness! Show your support for Alpha-1 Awareness UK, spread the word about Alpha-1, and tell your friends about the new shop! Best of all, come along and buy something – every purchase helps support Alphas in Britain.
This website is run by Alphas and their carers. We do our very best to ensure that all information shown here is up-to-date and accurate. However, you should always consult your own GP or other medical professional if you have the slightest concerns about your health.