I have had lots of problems with chest infections and a constant cough etc. and now after 4 years a specialist has told me that I have Alpha 1 deficiency then told me he was the wrong Dept. to deal with it and said to contact my doctor.

I contacted the doctor after they sent for me to be told it was too complicated for them and they would refer me to a different specialist.I discovered this site and this is  about the only information I have. I have been back to my doctors and got a little bit more information but no medication or anything I was told if it was any help they thought I was now going to see the right specialist!

The doctor has said there is no point in testing my children unless they show symptoms.

I feel  a bit lost at the moment no one has explained anything much or given me any idea of what will happen the specialist said they will just give you the enzyme it will be OK.

I wonder about the constant cough medicine and lack of sleep.

I will keep an eye on the web site and see if there is any updates as I have no clue what to expect.

Thanks for the opportunity to ramble!

A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.

John M

Alpha-1 UK Support Group Webmaster

hi i was told a year ago am a carrier of alph. but am 38 with c.o.p.d and finding it hard to cope.

what do i do???

iam a alpha1, and have copd.

Hi, nice to visit greats site ^^your information can help me and many people.thank you so much.Increase your community with intranet software, business intranet with low cost at officeability.com

A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.

John M

Alpha-1 UK Support Group Webmaster

hi everyone my son was diagnosed as PiZZ aged 8weeks in 1996, i am PiMZ as are 3 of my other children and i have one who is PiSZ. my son jacob has got severe hepatic fibrosis because of this and my daughter (PiSZ) has had lots of chest problems but i was told by my local hospital that A1AD was not the cause. any advice would be great.

claire xx

A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.

John M

Alpha-1 UK Support Group Webmaster

A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.

John M

Alpha-1 UK Support Group Webmaster

My Father was diagnosed around 10 years ago with the MZ strain and now has COPD.  I was tested 3 years ago and am the same strain as my father, but my 17 year old daughter has just been diagnosed with the SZ strain.

She now is on permanent steroids and has to have bone and live profiles, full blood counts as well as a chest x-ray and has to visit a specialist in Cambridge.  She also had a great weekend job as a cook in a coffee house but has been advised today by her consultant to give that up as the fumes from the cookers will affect her lungs - so she is now jobless, told she can't drink or smoke (luckily which she doesn't do).

Very worrying time for us as and would be good to be in contact with other suffers to share views, ideas and insecurities.

Yours

Lisa

I am so pleased to come across this support site. My daughter is zz and has suffered with many chest infections and penumonia during the past year. My whole family is infected with this desease and am frightened about the future. I m hoping to meet up with other sufferers and their families to share insecurities . Yours sincerely M P Jones

A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.

John M

Alpha-1 UK Support Group Webmaster

hi i am hoping someone can help shed some light , i was recently contacted by an estranged uncle from my fathers side who has alpha 1 (pizz) on oxygen 24/7 and awaiting double lung transplant , he suggested i be tested for alpha 1 along with my mother , we both went to get tested and both came back abnormal that is all we have been told and been referred toa respiratory clinic my mum also suffers from smoking related copd and lupus .

i am 28 and have smoked since i was 12 i gave up staightaway on hearing my result was not normal as my uncle said this was the main reason he was so ill , surly the damage would aleady be done if i have any form of alpha 1 ??

also i do have a few symptoms i have always put down to smoking but have become alot more noticable since giving up smoking , i get really short of breath this can happen when doing little execise or getting out of bed , i find it happens alot when i am laid flat on my back , it has progressivly got worse and stops me in my tracks to catch my breath .

i also have a skin problem which im not sure what it is i was told it was a form of exzema i get raised red lumps on my hands and feet a little like little blisters they hurt intill i break the skin on them and they leak a oily water discharge .

could anyone offer some advice as i do not know alot of this disease and neither does my doctor when i asked her i was told she didnt know and i will have to wait for referral .

i also have an 19 month old daughter

what happens next ?

A member of the Alpha-1 UK Support Group committee has responded privately regarding this posting.

John M

Alpha-1 UK Support Group Webmaster

Having just received my GP notes as getting private health insurance and it says " Alpha-1-antitypsin phenotype (c). PI type :MS. This sample is heterozygous for the S deficiency.

I was told my test was "normal".

My Serum A1 is 1 g/L and flagged as low and I have raised SGPT - which they did comment on but said it was "not unusual".

Before I ring up (again) and ask to clarify - am I being a hyperchondriac here or are these results significant?

Thanks

Mary

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

John M

Alpha-1 UK Support Group Webmaster

Hi after about 4 years of trouble with my breathing i went to a doctor in america he said i have a 75 with normal being 90 to 200...said i have the Pzz i am 56 and that seems to be a little later than a lot of alphas. My sister has it but it has infected her liver, its enlarged.

why cant we have the augmenatation therapy is there any hope. my dad lived to 80 with his lung problems so i dont really know what is bad or good. My consultant in england says i dont really need to see him as he doesnt consider mine to be too bad but i only blow 550 on the peak flow and have 70 percent lung capacity

The late 70's was certainly early for your grandfather to be diagnosed with Alpha-1. Sorry to hear you are having both lung and liver problems. If there is anything we can do to help with support and advice please let us know. Alternatively you could join our mailing list.

Take care

John M - Alpha-1 UK Support Group Webmaster

I made a mistake I'm PiMZ and my daughter is PiSZ as my partner is a carrier PiMS.

Hello, my name is Kate, I live in Daventry, Northamptonshire. My granddad was one if not the first person in Britain to be diagnosed with Alpha 1 in the late 70's and had case studies done on him at the Royal Free Hospital in London. My granddad's 2 brother died very young before anyone jnew about Alpha 1. I am a symptomatic carrier of Alpha 1 and I have problems with my liver and lungs. My 2 year old daughter also has Alpha 1 and is PiMZ so far she is healthy. Just thought I'd say hello.

Kate