What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 Antitrypsin Deficiency also known as Alpha-1, A1AD or AATD is an inherited, genetic condition that is passed on from generation to generation. As the name suggests it is a deficiency of alpha-1 antitrypsin (AAT) in the bloodstream. AAT is an enzyme produced in the liver to help protect the tissues of the body during infections. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.
News
- Remembering Bev Burroughs – Alpha-1 UK Trustee (2011-2024)1st Feb 1956 – 25th August 2024 Bev Burroughs was a dedicated Trustee of Alpha-1 UK from 2011 until her passing in 2024. Her journey with the organisation began when her dear friend, Linda Cooke, was diagnosed with alpha-1 antitrypsin deficiency, a rare genetic condition affecting the lungs. Together, they discovered an online Yahoo discussion … Continue reading “Remembering Bev Burroughs – Alpha-1 UK Trustee (2011-2024)”
- Coronavirus (COVID-19) 11th August 2022It seems like a very long time since the alpha-1 community was facing the uncertain prospect of the COVID-19 pandemic with the concern that patients with alpha-1 antitrypsin deficiency were at a potentially higher risk than the general population. Some of you may remember the ‘briefings’ that I wrote in April 2020 and the subsequent … Continue reading “Coronavirus (COVID-19) 11th August 2022”
- What is happening with clinical trials in the UK as we slowly emerge from COVID-19, and how can you continue to support clinical research into new treatment options?The last year has seen intense focus on the development of treatments and vaccines for COVID-19, along with respiratory clinicians continuing to be on the frontline of treating patients with COVID. Consequently, research into Alpha-1 and many other diseases has largely been on hold. As significant progress has been made in the UK and globally … Continue reading “What is happening with clinical trials in the UK as we slowly emerge from COVID-19, and how can you continue to support clinical research into new treatment options?”
- European Pathways of Care in AATD StudyPatients : Please share this study with your clinicians and encourage them to participate. Identifying the different pathways of care through which patients with AATD are diagnosed and managed within the different healthcare systems across Europe is a challenge but at the same time would provide information invaluable both for AATD experts and patients In … Continue reading “European Pathways of Care in AATD Study”
- Annual Meeting Update 2020Annual Social Gathering & Information Day 2020 As many of our veteran members will know we have held our annual event in September every year for over 20 years (yes, we’ve really been supporting alpha’s and their families for that long) and this year is no exception. However, despite historically hosting their annual meeting … Continue reading “Annual Meeting Update 2020”