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Hello Everyone, Can anyone tell me anything about Alpha 1 Antytripsin Please ?

hufferpuffer profile image
15 Replies

I've just found out I have it after being diagnosed with Emphysema 9 years ago, I asked at the time if there was a possibility of Alpha 1 and the GP I saw said not to be 'silly' as I would be dead already ( 49 at the time ) ??? last year same doctor seemed to think I was secretly smoking! ??? ( I packed it in 9 yrs ago! ) I can't seem to find much info and was wondering if

it's a faster decline in lung function, thanks for reading and any thoughts...huffferpuffer :)

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hufferpuffer
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15 Replies
chellshock profile image
chellshock

Cant answer your question but wanted to say what a lovely picture x

hufferpuffer profile image
hufferpuffer in reply tochellshock

Thanks Chell, I took it in the garden about two months ago, it's a Peacock on an Echinecea! x :)

chellshock profile image
chellshock in reply tohufferpuffer

It look amazing so colourful x

A good explanation is here :

alpha1.org.uk/

You may want to check BLF's info too:

blf.org.uk/Search?query=alp...

I would phone the helpline tomorrow to ask about the questions you need to put to your doctor about the diagnosis, care and treatment.

Take good care of yourself.

Best wishes BC

hufferpuffer profile image
hufferpuffer in reply to

Thank you BC! :) much appreciated!

Really stunning picture. And I agree with BC call the helpline - I am sure they could help.

Take care, TAD xx

hufferpuffer profile image
hufferpuffer in reply to

Thanks TAD I'll give them a call xxx :)

mattcass profile image
mattcass

Hi hufferpuffer I'm so sorry I cannot answer your question, But may I say what a terrific photo well done. Matt

hufferpuffer profile image
hufferpuffer in reply tomattcass

Thank you Matt it's amazing what you can do with a little didgi camera! :)

Toci profile image
Toci

I don't know much but I do know it can be hereditary. If you have children they need to be checked and counselling should be offered.

hufferpuffer profile image
hufferpuffer in reply toToci

Yes it is hereditary! its in my gene's, I've told my children and nephews and nieces, fortunately most of them are non-smokers. thanks Toci :)

Sooki profile image
Sooki

My sister is antytiptrin deficient and I am partial deficient,it is hereditary ,my sis is 66 with severe emphysema ,and not dead yet.I do know that tha Q E hospital in Birmingham was doing trials as my sister was involved.The Internet is also a good source.I also inherited IPF from my mother..,and I also have emphysema ,ain't life a sh.. As far as I am aware antytiptrin deficiency in itself does not kill you as it is a deficiency ,your lungs do not have the protection that others do.Hope this helps.

hufferpuffer profile image
hufferpuffer in reply toSooki

Thank you Sooki that does help a lot! guess we're all in the same boat! take care,huff xxx

Yes just know its hereditary.Not much else I'm afraid!

I hope you give the Doctor the rounds of the table! He sounds a w.....!!

Loved the photo,beautiful xxx

fishtail profile image
fishtail

alpha 1 is not always hereditry (though in my case it is ) a friend of mine has it due to pneumonia in childhood.My diagnosis is Alpha 1 AD,my mother had it,my two nephews have it and I'm happy to say my 3 sons have all been tested and are clear.From what I've been told because I have copd too it does have a big impact on my life span.however I intend to take really good care of myself ,take all my meds and live a good life.xxx

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