Alpha-1 Antitrypsin Deficiency Support from Alpha 1 Awareness UK


Welcome to Alpha-1 Awareness UK

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
  • wheezing

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.

 

 

 


Fund raisers

 

NHS Nurses Head Shave

On the 19th November five very brave NHS nurses are to shave their heads for charity. Traci-Ann Yelland, Ali Purkiss, Teresa Sanderson, Karen Pellow, Wendy Firth are raising money for Alpha-1 Awareness UK, Hospiscare & Cancer Research UK. They have setup a page on Just Giving to take donations online. Please visit their page and donate what you can to help the three charities as they are very deserving of our help. Their page can be found at https://www.justgiving.com/teams/NHS  , their team is called “NHS Nurses Head Shave”.

 

SPONSORED EUROPEAN CHARITY MOTOR BIKE RIDE

Supporting Alpha 1 Awareness UK & Alpha 1 Antitrypsin Research Programme at the Queen Elizabeth Hospital, Birmingham
One of the members of Alpha 1 Awareness UK, Mario Bianchi, who himself is a PiZZ Alpha, is planning to organise a Sponsored Charity Motor Bike Ride in the Spring of next year, from 22nd April – 30th April, to raise funds for Alpha 1 Awareness UK and the Alpha 1 Antitrypsin Research at Queen Elizabeth Hospital, Birmingham.
The plan is to set off from the QE Hospital on Saturday 22nd April to ride through France, Italy & Sicily having three overnight stops, to the final destination of Malta, where you will have a 2 night stop over before returning by the same route and same stop overs to the QE Hospital on Sunday 30th April. Mario says there will be at least 2 experienced motorcycle marshals with European riding experience, for safety. Mario has secured a good accommodation deal in Malta and is looking at other stop overs through Europe.

 

Are you or any of your family and friends an experienced motor cyclist and would you like to join this great bike ride, through Europe? If so please contact Mario, he would love to hear from you and can give you more information, about routes, accommodation etc you can email him at mariosuperio@hotmail.com or you can contact Alpha 1 Awareness UK at secretary@alpha1awareness.org.uk or the above address and I can forward your messages to Mario. Many biker groups are brilliant at supporting Charities, so please spread the word and let see if we can have a real good size group travelling through Europe, Mario is prepared to put in all the hard work organising the trip as well as taking part himself, so please support him.

 


Below is some helpfull information from the British Lung Foundation

Welfare benefits
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.

Donate with JustGiving

FIND-A1

The FIND-A1 project is designed to engage patients, doctors, nurses and other medical healthcare providers in the detection of the many alpha-1 antitrypsin deficient (A1AT/AATD) patients who are currently not diagnosed, or who are diagnosed as having some other condition.


Latest News

Respreeza Marketing in Europe

CSL Behring announced today that the European Commission (EC) has granted marketing authorisation in
Read More

Marketing Authorisation for Respreeza

CSL Behring announced today that the European Medicines Agency (EMA) Committee for Medicinal Product
Read More

British 10K London Run

Alpha 1 Awareness has once again secured 6 places in the British 10K Run to be held on Sunday 12th J
Read More

Open Letter on Specialised Services

The Specialised Healthcare Alliance has today sent an open letter to the the PM and other political
Read More