Having arranged testing for my 77 year old mother with COPD last week I was surprised to see in the letter that the WHO recommends testing for anyone with COPD regardless of status.
Having seen some of you experiencing difficulties with your GP’s arranging this test and having read conflicting information on this board I attach the below. I don’t have the time to search for the official WHO statement but this ones from the ATS.
Regardless of what the WHO recommend with regard to testing for A1 currently here in the Uk,Nice our governing body concerning the application of medicines and prodecures do not recommend the A1 inhibitor replacement therapy treatment with regard to COPD and or Emphyesma probably based on cost and it's general effectiveness and that standard care be applied to all patients.nice.org.uk/donotdo/alpha1-...
Yes true, I do know Irish Alpha one patients took it up with the Irish Govt and secured funding for same treatment…
I think certainly in elder patients with COPD any A1 deficiency will have alredy done it's damage but anyway we do have some info from the BLF here if you are interested.blf.org.uk/support-for-you/...
Interesting info ck.
My understanding is people who of a younger age group, ie below 40 (unsure of that exact criteria) and where people in the family have already been diagnosed is when people in UK will be tested.
There could be mention of the criteria on the Alpha1 Awareness Charity site:
BLFs page on A1AD diagnosis:
blf.org.uk/support-for-you/...,
Years ago when I was doing ongoing course of PR at the hospital, there was an older gentlemen in his 70s with a recent diagnosis of Alpha 1, he was being treated from childhood as having Asthma !!
Does make you wonder, Alpha1 folk have more specialist care than your average COPD folk from what I have heard from other Alph1 folk.
What made you arrange for your mother to be tested ck?
Yes that’s the case here. When talking to the Alpha One people I heard of the great follow up clinics with a Professor, Rehab etc etc. It’s a VIP club over there 
I arranged for testing because her mother a life long non smoker died of Emphysema. My mother only smoked 5 a day for about 6 years and has an FEV1 of 58% and has a similar FVC with a ratio in the 60’s. She also has a very pronounced Barrel Chest and struggles with her breathing. She’s on Spiriva and a few others via Neb but despite all this hasn’t been referred to Rehab, neither has she been seen by a Pulmo to advise of her stage. I also have SAD and CB but have normal Genotype. My sister, non smoker, has similar numbers to my Mum so she’s next to be tested if this throws up anything.
Oh yes very wise to get family tested, its certainly sounds like there is a possibility. I hope all are ok, although the extra special care wouldn't go amiss. You take good care ck, do let us know what transpires.
Nice to chat with you.
BK
I am alpha.1 deficient and as far as I am aware the only people who get treatment in the UK are children who have liver or lung damage through alpha1,although there are centres but for support for adults.
Looks like we have a different awareness maggie. BLF has some good information about the treatment: blf.org.uk/support-for-you/...
They treat the presenting illness, copd for instance with lung reduction or transplant. Aaat is not treated specifically. Augmentation has had a trial but is not accepted in the UK at this time. The article begins by stating that UK only treat the illness caused by the deficiency
absolutely they treat the individual patient.
Of course they do but not a specific for alpha 1.many people have LRD. And some are offered transplant but not all have alpha1
so true not all have alpha1
I Have Alpha 1, My sister was told she had asthma when younger then they done the test for A1 was poss so me my other sister and brother and all children has the blood test just me and my 2 sister have it. It's a gene passed by both patients. One sister has had a double lung transplant and the other one waiting im doing pretty good with valves fitted in my left lung. As for Specialist treatment I don't think so. But maybe it's because it's not smoking thats damaged our lungs but a lung disease 🤔
The World Health Organization, at one time, thought dogs were able to get the virus and pass it on to humans. So they had all dogs quarantined. Then they reported that dogs were not spreading the virus......so......
WHO let the dogs out!!
Well my mothers tests came back negative for Alpha One, didn’t see the letter but she’s likely MM. I’m still interested in getting to the bottom of whatever Gene has predisposed our family to lung disease. I’ve just heard my cousin also on my mother’s side has also developed Emphysema @ 40 with a history of light smoking.
IS THERE ANYONE WHO HAS IPF WHO WRITES ON THE BLOGS
Spirometry Guidelines
How things move on...
Alpha 1 and emphysema 
