Hi i new on here does anyone on here have Alpha 1 antitrypsin Deficiency i have some problems that my sister who died of this 2 years old

but whem i tell my doctor they do not know must so hope that someone could help me what they are going thought i also have COPD i know about this just that my sister had lots of pain in her legs and sometimes hurt to touch like thet are bruised x

8 Replies

  • Hi Angels2810 Alpha 1 anti trypsin is hereditary an is COPD I had a blood test to tell me if I had it as I don't smoke I have one part of the gene but not all of it, I have COPD lol xx

  • I got both gene ZZ and COPD how unlucky for me lol xx

  • Hi angel I have zz too plus copd and chroni asthma , sorry to hear that sister died how old wad she ? If u want to chat let me know xx

  • You need to stress the point with your GP, explain your fears, and if you do not get a full explanation, ask for a visit to a specialist,

    there are other problems with Alpa1 which might need to be checked,

    I have it, if you look on google there is a website and blog,

    take care Richard

  • Hi Angel, just seen your post, i was diagnosed with COPD in 2004 i was only 42 so my GP did a blood test which showed i had the Alpha-1gene.I wasn't told much about it really just that i am predisposed to having a lung problem.I was told to stop smoking and sent on my way.My Mum died aged 58 from lung problems but this was 25 years ago and we knew nothing about this then.My Consultant has never really mentioned it i think he puts my problems down to smoking bur at my last appoinment i saw a different a Doctor and this one has reffered me to a Genetics Expert and im seeing him this Friday.I have a son so i need to know the score really im dreading going but it has to be done.I hope you get all the information you need the BLF will help you with advice.

  • thanks I see a doctor at the hospital told me somethings they know more then my own doctor who know nothing everytime I am ill my doctor all they do here a pill as if it will go away but it will not because I have the ALPHA 1 ZZ my ex had the test he was ok but I have 3 daughters and doctors says they do not have to be tester that they may only have 1 Z that they maybe a carrier I know now my mam & dad had it but I so miss my sister as I did not know how ill she was ill it was to late i am from a big family of 14 lol no tv that i am the only one apart from my sister have it when some had the test and said they were ok part of me was glad that they are ok but the other mad that why me all they say it u be ok how do they know what its like from one day doing everything to doing little allway out of breath and arms and legs in pain that i cannot walk far no one know how we feel only us so sorry for long message just got carry away just wanted to talk to someone who know how i feel xx Ann

  • Hi Ann,thanks for your reply, please bear with me as im doing this on my mobile as my lap top is broken.I lost my sister also 2 years ago in December she had fought cancer for 10 years but then developed lung problems and passed away aged 58 same as my mum.I didnt know there were different types of the Alpha condition but i think im also a carrier.And your right people dont understand and i also get angry.I have 2 remaining sisters who are healthy so its just me thankfully.Anyway i will find out a bit more on Friday when i see the expert.Oh dear its being so cheerful that keeps us going lol..

  • ok speak soon if u needed to talk just message x ann

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