Hi Marianne, I am so sorry to hear your news of your daughter. Whilst I cannot give you any info directly to help you I can recommend you join the Alpha-1 uk.org website (completely free) where I know there is a link to a usa web site for alpha kids which might be able to help. What I know you *will* get from both sites is support from people who have alpha 1 atnitrypsin deficency (as I do) or who care for them and therefore understand exactly what you're going through. Hope this helps. Ray

I have been married for 34 years to my wife Sheila and we have three sons aged 33, 31 and 29. Most of my family suffered with respiratory problems especially on my father’s side and the diagnosis in all cases was Asthma. During my late teens to late twenties in the 60’s and 70’s I smoked as did many others. It was during this time that my breathing problems worsened and I contracted pleurisy. I was referred to a specialist in 1978 and was diagnosed with early signs of Emphysema and the consultant at that time said to me if I continue smoking I will be dead before I reach 50. Well that was the wake up call I needed and fortunately I managed to stop smoking immediately. However, the problem did not stop there, my part time profession was a musician in a cover band playing in clubs and pubs which lasted for 30 years, and you’ve guessed it the dreaded passive smoking continued to make my condition worse. In 1999 I contracted double pneumonia and was in hospital for a week and off work for 2 months after which I had a follow up visit with my consultant. I had various blood tests and was asked to return for the results where I was told I had A1AD. My consultant went on to explain about, rare condition, genetics, blood disorder and damage to lungs etc which at that time did not really sink in as I am sure it doesn't with most people. I took note of what I was diagnosed with and decided to surf the net which confused me even more as there was not much available then and what was available was so technical and confused me even more. Two years went by and after much confusion and surfing I came across the Alpha1 Yahoo UK support group which I joined and looking back it was the best thing I ever did. The support from this group was outstanding and I learnt so much more from them than I did from any GP or Consultant. Shortly after I joined this group I was referred to Professor Stockley at ADAPT in Birmingham who specialises in A1AD and it was confirmed that I had the more severe form of the condition PiZZ. My wife was also tested and she was normal PiMM which meant that all three sons were carriers PiMZ on the basis that each child would receive one gene from each parent which would be a "Z" abnormal gene in my case and an "M" normal gene from my wife. In 2004 I contracted pneumonia again with a further stay in hospeital and another 2 months off work. My health was deteriorating to the extent that I was finding it difficult to continue with my job which was working as a senior manager for a Japanese electronics company which involved world travel. On the 1st of January, 2006 I had no choice but to give up work. Later that year I took part in the Roche Repair drug trials at ADAPT which continued until August 2007. In 2007 I became moderator for the Alpha-1 UK Yahoo Support Group and in 2008 joined the committee and became webmaster for the group which now keeps me fully occupied.

Hi, my name is John, Itoo have Alpha1 Antitrypsin Deficiency (A1AD) and am secretary /treasurer to the same support group. Unlike many of our members I was very fortunate to have a double lung transplant in December 2000, this has made a huge difference to my life, the transition from being on oxygen 24/7 housebound and only able to go out in a wheelchair, to the freedom that I have today. Life for me is still pretty good almost 9 years after having a transplant. I have always stayed withe the support group and hope that I can help , advise and support others that are not so well as myself. If you wish to receive any further information please contact me or visit our website at www.alpha1.org.uk Click here to reply

Hi everyone My name is Joe like Christine I suffer from the genetic disease that is Alpha 1. Thankfully I have only been a real sufferer since 2002 when within a six month period my life changed. From being very active to suddenly becoming less mobile I just couldn't do normal things, it was coming to terms with this I found difficult. I joined The Alpha1 group about a year ago. The support this group gives to close friends and complete strangers is remarkable. The mantra, we all have to walk the same road with a disease, some are just starting while others are way ahead is very true. Problems you now have, we managed to solve or found someone who could do it for us long ago. In truth we all help one another. If anyone suddenly finds they have this disease please contact us we will help if we can