Alpha1 Antitrypsin: Just as a matter of... - Lung Conditions C...

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Alpha1 Antitrypsin

mikeadams51 profile image
11 Replies

Just as a matter of interest how people on this site have alpha1. I was diagnosed with COPD back in 2007 partly caused by this genetic disorder. As the last known Alpha1 research project has closed based in Birmingham I was wondering if anyone has any further news.

Thanks in anticipation

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mikeadams51 profile image
mikeadams51
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11 Replies

Hi mike, I'm an alpha 1 ZZ phenotype and am now under the care of Professor Stockley , QE hospital Birmingham, ADAPT, it's classed as research cuz NHS don't fund alpha's but will fund research. Nice to meet u, what phenotype are u. X Sonia x

mikeadams51 profile image
mikeadams51 in reply to

ADAPT has shut down due to lack of funding. That's why I am touting round to see if any local NHS have picked up the batten

in reply to mikeadams51

Well I'm in the adapt group had my appointment on the 6/11/14 next one is January 14, it is definantly up and running, x Sonia x

mikeadams51 profile image
mikeadams51 in reply to

Well that is interesting because I received a letter stating the research project has stopped due to funding shortages

in reply to mikeadams51

All I know is I was refered to professor Stockley when I was diagnosed in May, but it is classed as research as the nhs will only fund research, have u tried ringing them about it. X Sonia x

Nik37 profile image
Nik37

Hi im a alpha type zz diagnosed march 13 .

mikeadams51 profile image
mikeadams51

Nice to meat you both. I am ZS with a lung function of 30% now

out-for-lunch profile image
out-for-lunch

hiya ...... I'm ZZ with 27% FEV1

Not linked to any A1 specialist clinic .... often tempted, but as there is no specialist A1 treatment available here in the UK I question what benefits there might be.

Thoughts please.

Bryju124 profile image
Bryju124

Hi my eldest son and his son both have the alpha 1 Antitrypsin gene my youngest son and his son don't, my test came back clear even though I have emphysema waiting for hubby's to come back now :)

in reply to Bryju124

Luckily all my kids are MZ but if they have kids and their partner is MZ too they could have a ZZ , just happy to a degree they are only carriers wish I haven't given them anything by hey. X Sonia x

Ps ...nice to meet all u alphas xxxx

mikeadams51 profile image
mikeadams51

Hope it does not cause any major issues for the family. I am the only sibling in the family with full blown alpha 1. My brother is a carrier and it has not been passed to his children. My other brother and sisters wont get tested

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