Hi Rob, Please use the following link to join the mailing list: -

http://health.dir.groups.yahoo.com/group/alpha1uk/?v=1&t=directory&ch=web&pub=groups&sec=dir&slk=13

Any problems please let me know by clicking on contact webmaster on our website.

Best regards

John M

i tryed join ur sight get message about mail client i wonder if i could join this way as i have alpha1 antie trip difficency and would like to learn more about your group my consultant is professoe corrise

i look forward to your reply

robert mckenna

I haven't looked on the website before now, and it is fantastic, the info is clear and concise. I came on to look at the dedication page now that Kelvin is on there and Joe's poem is beautiful. I will continue to lusrk to keep the contact up as children still not tested and don't know what support may need in future (hopefully none in the nicest sense). The group just keeps going from strength to strength which is fantastic, because it means A1AD is now getting recognised and diagnosed. Love and bestwishe and good health to all Sarah x

Hello Carol,   Thank you for contacting us. I am sorry to see that you have been diagnosed a PiMZ alpha carrier. I can understand how worrying this must all seem to you, both for yourself and your sons.   I have sent you our new Guide to A1AD, I do hope you find it useful and I'm sure it will go some way to answering the many questions that you have at the moment.   As stated in the guide we are associated with ADAPT, the UKs leading experts in the field of A1AD. Professor Stockley, the Project Director, is our Patron and he is always willing to help with queries which we cannot answer ourselves.   If you feel that you would like to join our group, where you will have the support of others with experience of the problems A1AD can bring, please just let me know. I realise that respiratory problems are more common than those liver related, but we do have a few members with liver concerns. Meanwhile, if there is anything else I can help you with please feel free to ask.

Kind regards, Christine Torrance. Alpha-1 UK Support Group Owner. www.alpha1.org.uk

What a great site. Very informative. Thank you

Jenni (ZZ)1/3/2010

Dear Alpha,

I have just bin diagnosed with Alpha 1 Antitrpsin phenotype MZ, after being in hospital for 5 weeks with severe pains in my left loin and raised LFT s and other symptoms. I am at present awaiting the results of a liver biopsy. Like a number of your members, I wanted to find out more and would love to be in contact with others and professionals that are experts in this deficiency. I want to know more, not only for myself, but for my 3 sons age 25, 21 and 18. I look forward to hearing from you in due course. Thank you for this site and giving me more understanding.

Best wishes Carol Adams 

A member of the Alpha-1 UK Support Group committee will respond to you privately regarding your posting.

John M

Alpha-1 UK Support Group Webmaster

I was diagnosed last year although I suspected I had emphasimia as my brother passed away two years ago after suffering for many years, so I new my symptoms where the same, I have spent this year trying to come to terms with it and have hidden the illness from friends although I have now had to inform work as I am struggling more each day and find i am struggling all the time with breathlesness and may have to finish working which is really scaring me to be honest, and I dont want pity of friends when they do find out. To be honest Im just a bit affraid of what the future holds and have no one to speak to

Hello everyone

I was diagnosed with A1AD about 2 years ago inherited the gene from only one parent, and it has affected my liver. Luckily I dont have any symptoms other than raised ALT levels.

Information regarding Phenotype PiFZ can be found using the following link: -

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1705304/

John

Alpha-1 UK Support Group Webmaster

Hello,

I have just been diagnosed as pi FZ. I cannot find any info on the net about the FZ only MZ, ZZ etc. Any information would be much appreciated. Thank you

pl4ease help, I am antitypsin deficiant I see a specialist every year, know chaqnge in bloods and breathing tests. I smoked from 18-21, then, 27-28 but never heavy, although exposed to lots of secondary smoke as a child. My mom died after having a lung transplant. post 2 yrs, after being diagnosed with alpha 1  a few yrs previous, my father also died of a lung disease, but never diagnosed with alpha one, 2 uncles and a cousin both diagnosed, my sister only 35 has it and smokes and a very dear aunty is in hospital at the moment, she has alpha 1 she has breathing difficulties, chest infections she too smoked for yrs but gave up 17 yrs ago. my specialist says there as not been any change for me in 2 yrs, yet I find it hard to work, hard to recover from illness, including n, bruises, knocks, colds, chest infections ect plese help will I get worse??? I w3ant to prepare and do I test my kids, 11 & 15  thanks shaz

A very well thought out website with tons of valuable info.

Well done to those concerned.

The poem especially I thought for the remembered ones was so good.

Anita and I have just been looking at the website and think it looks really good. We are looking forward to contributing to the ADAPT page and watching all future developments.

We especially like the pictures where you all seem to be having fun.

Just lovely! Well done everyone. A very nice web site.

Feel free to leave a message!

Thanks,
Alpha-1 UK Administrator