Thanks for taking the time to visit my JustGiving page and supporting this wonderful charity Alpha-1 UK Support Group.  I'm suffering from this genetic disease which is currently untreatable in the UK. 

What is  Alpha-1 antitrypsin deficiency (AATD)? It is a hereditary genetic disorder which may lead to the development of lung and/or liver disease. It is the most common genetic cause of liver disease in children. Adults can also be affected by Alpha-1 and may develop lung conditions such as emphysema as well as liver problems.

Alpha-1 antitrypsin (AAT) is a protein that is produced in the liver and in healthy people (MM) genotype, it is released into the blood circulation so that it can protect the body, from the damaging effects of inflammation. The protein that is produced by Alphas' (ZZ or SZ) genotypes does not function properly and gets trapped in the liver. This can cause damage to the liver and because the protein can't reach the circulation, the lungs lack the protection they need from the damaging effects of pollutants and infections.

It’s thought that about 25,000 people in the UK have the genetic condition though most remain healthy so few have been diagnosed.

There is currently no approved treatment or cure in the UK for this debilitating disease and this is why this charity is so important in supporting the affected patients, families, driving research and supporting clinical trials.

Because I inherited both ZZ genes my lungs have been extensively effected and now I need ambulatory oxygen while exercising. 

My daughter Sarah, who currently lives in Dubai, is also at risk along with her 2 siblings, as they will all have inherited one Z gene from me. 

Sarah is flying over specially to run the Virgin Money London Marathon on the 28th April 2019 and has agreed to run in support of the charity Alpha -1 UK Support Group.

I know the people who know me generally think I look fairly healthy for my age but not all disabilities are visible. I would love to have your support as I've been fighting this for over 10 years and I want to keep fighting for a considerable time so I can see my seven wonderful grand children all grow up and spend quality time with my family and friends.

Both Sarah and I are very grateful for all your support and any donation will mean so much to all Alpha-1s and our family.

Thank you

Paul Carley and Sarah Read

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