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Report from Lin Daniels, Secretary Alpha 1 Awareness UK. We had a good day at our lunch in Cornwall, initially we were disappointed that 3 people failed to attend, but then 2 people turned up without warning having seen about the lunch on the website, they were young parents whose, now 18 month old son, was diagnosed at birth with Alpha 1, he was on medication at first but like a lot of children has been taken off these and is just being monitored by the liver specialist at Birmingham Children’s Hospital, who they told me is very good and knows a lot about Alpha 1, as does their neonatal specialist at Treliske Hospital in Truro. The adult Alphas, were all very appreciative of the day and of having the chance to talk about Alpha and how it affects them, they were all very positive and all said they had gained a great deal from attending the day. [The background to this meeting was that Alpha 1 Awareness had a number of members in the Cornish peninsular who found it difficult to travel to events in other parts of the country. We decided to travel to the patients and talk to them about life as an Alpha.] |