A message from Connie Storey
Our alpha cousin in Washington State

You have sent out your message on the internet and it has floated into our line of sight.

We read it and we recognize that we know you.
You have said the magic words that bind us together...

Alpha 1 Antitrypsin Deficiency

Here in this part of the internet we know what that means and we are ready to pull you close and call you sister, brother, friend.

Here we know the secret passwords;
breathless, sleepless, frightened... disability. But, we know other things too.
We know that life is often more beautiful and rewarding when we are made to consider that we won't live forever.

We know that there are friends who are always watching for your message to appear and when you call out, cry out, casting your message wide over the internet those mysterious friends will reach out and speak. It will be like they are in the room with you and they know exactly what is happening with you. They understand.

Here, in our private home just off the busy streets of the internet you will find encouragement and knowledge. You will find that Alpha 1 is not an immediate death sentence nor the worst thing that ever happened to you.

Since this is a genetic condition we all pretty much feel that we are related... cousins, siblings, long lost relations. Ask us anything at any time.

We are here for you

John Doyle

D.O.B. 17-01-1944
Alpha lung PiZZ (diagnosed 1996)
I had a Double Lung Transplant 11-12-2000.
I am married to Mary and between us we have six children and six grandchildren.
Visit my website.

Linda Cooke

D.O.B. 30-10-1950
Alpha lung PiZZ (diagnosed 1992)
I have Emphysema, Sarcodiosis, Pulmonary Fibrosis, some bronchiectasis, and am on Oxygen therapy 24/7. I have since had a double lung transplant on the 4th May, 2009.

I have two adult children, my son is PiMZ, and my Daughter is PiZZ.

Jim & Carol Hosley

My name is Jim Hosley and I am an Alpha. I live in a small town in "upstate" New York, USA called Pine City.
I am 61 and am married for the 2nd time to Carol (24 years next month).I have 3 children from a previous marriage.

I was first tested for Alpha 1 in June of 1997.
When my testing was done the results said I had a serum level of 2.4 micromoles/liter and a phenotype of PIZZ.
During the "Sheep Juice Study" I had more testing done.

My phenotype and genotype have been done and the results are that I am a PIZMmalton. The Mmalton is a quite rare gene and is as deficient at the Z gene. I have been told they have traced the Mmalton gene to Sardinia... I did not know I had any Italian blood in me but... genes don't lie.

I have been retired from the Postal Service since October, 2003. When working I had half a dozen lung infections every year.

199 Snowburg Road, Pine City, NY
14871 USA
Tel 607-734-1148
a1adjim@earthlink.net

Chris Torrance

My name is Christine Torrance (usually known as Chris) and I was born on April 7th 1946. I was diagnosed a PiZZ Alpha with emphysema in 1998 following many years of breathing problems. Until then these had been diagnosed as asthma.
Even though I now have supplementary oxygen therapy 24/7, I am still fairly active. Of course, I have had to adapt my lifestyle in some ways but I am still able to enjoy life. I am divorced. I live in the beautiful city of York and I have two MZ sons.

My eldest son Grahame unfortunately died following a motorcycle accident in 1991 at the age of 19. I mention this because he was an organ donor, a subject close to the heart of many an Alpha. He carried a donor card and we were aware of his wishes so the decision was his, rather than ours. Through his death, Grahame was able to give the gift of life to five very sick people. Who knows, some may even have been Alphas... something I had never even heard of at the time. Needless to say I am very proud of him.

John Mugford

My name is John Mugford born 5th Oct 1951 married to Sheila with three sons. Most of my family suffered with respiratory problems especially on my father’s side and the diagnosis in all cases was Asthma. I was no exception as were my sister and brother who were also diagnosed with asthma from childhood. 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 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 Alpha-1 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 hospital 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 Support Group and in 2008 joined the committee and became webmaster for the group which now keeps me fully occupied. In 2009 I was also diagnosed with Mild Bronchiectasis.