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.
Don’t forget when shopping online to register with www.easyfundraising.org.uk and it won’t cost you a penny more to shop and raise funds in this way. In fact you could even SAVE MONEY as many retailers give exclusive discounts, special offers and even ‘e-vouchers’ when you shop through the easyfundraising site.
Easyfundraising is a shopping directory featuring over 600 trusted online stores, including: Asda, Tesco , Argos, Amazon, the Body Shop, NEXT, Debenhams, John Lewis, Toys’R’Us, HMV, Virgin, iTunes, CD WOW, Marks and Spencer, Currys, Dixons, Staples, PLAY.COM, Pets at Home, Choices Direct, WH Smith, The AA, RAC, Direct Line, Churchill, The Carphone Warehouse, Ticketmaster and 100s more…
Register for Alpha1 Awareness UK and just by doing your shopping online you will be helping raise funds for the Charity.
Also you can set up www.easysearch.org.uk, as your search engine page and register Alpha1 Awareness as your chosen cause then every time you search a webpage you raise money for the Charity.
Paul Spencer-amos ~ Tandem Skydive ~ May 2017
|Paul Spencer-amos last year did a tandem skydive and loved it so much he wanted to do it again this year. He thought it would be a great idea to use it to help raise funds for our charity. In Paul’s own words:
“I’d like to raise as much money as possible to help a small but much needed charity. A good friend of mine recently had a bouncing baby boy and soon discovered that baby Denton has Alfa one Antitrypsin deficiency which affects his liver, this could result in a liver transplant in early childhood. The charity have been fantastic, they provide emotional, financial and medical support and guidance for parents and sufferers of this condition.”
Please help support Paul by going to his JustGiving page and donating some money, let’s show him some support: https://www.justgiving.com/fundraising/PaulSpencer-Amos
Cori Ruktanonchai ~ Stockholm Marathon ~ 3rd June 2017
|Nick and I are running the Stockholm Marathon in June. It’s going to be our first marathon and we need all the support we can get. Before you consider dismissing us as completely insane (which we are!), we’re running to raise awareness for a rare, progressive genetic condition called Alpha-1 Antitrypsin Deficiency, which affects the lungs and liver. In August 2016, I was diagnosed with this condition, which very often presents symptoms as breathing problems while exercising. After research and many doctor’s visits, the symptoms are now under control. This wouldn’t have been possible, though, without advocacy and awareness, primarily through the charity, Alpha 1 Awareness UK (www.alpha1awareness.org.uk), where I am now serving as a board member.
By crossing that finish line together, we hope to inspire those who are currently affected that this condition doesn’t have to stop you from doing what you love. Onwards and upwards!
Cori’s Just Giving page can be found here.: https://www.justgiving.com/fundraising/Cori-and-Nick-Ruk
Paul Seager ~ 45 fells climb Covering 70 miles of Cumbrian Fells ~ 17th June 2017
|Paul Seagger with friends Craig Benson and Steven McGrady plan to do a lot of walking and climbing in Cumbria for us.
“My son Jack was born with Alpha 1 Antitrypsin Deficiency so on Saturday 17th June 2017 at 0443 I will set off with two friends, Craig Benson and Steven McGrady and we will attempt to climb 45 fells covering roughly 70 miles of Cumbrian Fells none stop. Our aim is to do it in under 48 hours and raise awareness of Alpha 1, raising as much money as possible along the way.”Please visit Paul’s Just Giving page to help support him. Even if you can only donate £1, it will all help fight: www.justgiving.com/fundraising/fell45
Anita Cousins ~ Torbay Half marathon ~ 25th June 2017
|Anita Cousins is running a half marathon for us to help raise awareness.
“For many of my friends you’ll have absolutely no idea what this means and no idea how lucky you are that you have never heard of it.. It is a very rare genetic condition that our special boy has to cope with daily.. So rare that our own doctor had to go on a course to learn how to manage Tysons condition.Tyson is a high risk of Emphysema by the age of 20, his lungs and liver have limited protection which means just walking past ciggerette smoke causes him to have an asthma attack.. So rare that there is not enough awareness or money to put towards finding treatment and certainly no cure.. I write this with tears streaming down my face because through all the smiles It breaks my heart knowing what we all have to face this…Funding is key to learning and understanding about this horrible condition. If you would like to donate please do.. If I can give up wine for a few weeks I’m sure you can give up a few pounds. Thank you so much 😘”Please visit Anita’s Just Giving page to help support her. Even if you can only donate £1, it will all help fight: https://www.justgiving.com/fundraising/Anita-Cousins3
Matt Rowley ~ Running 200 miles across Great Britain ~ 19th – 23rd August 2017
|Matt Rowley is doing something amazing for Alpha’s. In his words:
” I am running 200 miles across Great Britain to help raise money and awareness for the charity Alpha 1 Awareness UK and the condition alpha-1 antitrypsin deficiency.
My Mum has AATD and as a result has had two lung reduction operations to help her breath more easily and to give her a better quality of life. Without others in the past supporting research for AATD I doubt she would be with us today.”
You can find his JustGing page here: https://www.justgiving.com/fundraising/Running200Alpha1
Below is some helpfull information from the British Lung Foundation
Are you living on a lower income because of a lung condition? You might be entitled to extra support.
Read our welfare benefits information >
Take part in IPF Week
IPF Week starts on 17 September. IPF is a condition that makes the lungs thick and hard. It has no cure. Let’s increase awareness and raise funds for research and support.
Get involved with IPF Week >
Time to quit smoking?
If you smoke, quitting is the best thing you can do for your health. Find out why, and how you can take that first step.
Time to quit >
9 things people with lung disease want you to know
How many of these can you relate to? Ann shares her experience of living with a lung condition
Read her blog >
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.
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.