I have Alpha 1 antitrypsin deficiency and wondered if anyone else out there has the same. It is a rare disorder causing both lung and liver disease. Feel a bit alone at times with no-one in NZ to discuss this with except health professionals.

Hello Glenis, and welcome to the site.

Here are some case histories Glenis. i thought since no body seems to be suffering as you are, you might like to see what these peopkle did about their disease.
This is just one page of the site, and it lists about 5 or 6 peoples names that tell their story.

I am new to the comuntity and would like to know if any of you know how many in NZ have alpha 1. i have a friend who has it and would like to how many others have it.

Hi,
I was tested in the 1980s as part of a test for research when my father's blood was tested for AAT deficiency and had was found to have it.
Out of all of us four kids were all showed positive for the faulty gene.

I have suffered with Asthma for years and now have early COPD. Recently I asked my GP to be tested to confirm the earlier diagnosis so that my children and grand children could make lifestyle changes now as far as smoking was concerned. Out of my three children all have signs of asthma. My eldest Granddaughter also shows early signs. She is just turned four. My GP had never heard of AAT so I down-loaded info off the net for him and he arranged a test. Medlab could not do the test so it was refered to the hospital. I keep forgetting to ask my GP the result and he has not mentioned it again. I will ask him next time if I remember.

Acording to internet sites the stats are 1 in 5000 or 6000 people have AAT deficiancy. The numbers vary according to the site.

I have AAT and it has developed to Chronic lung disease. It depends on your prototype as to how bad it will effect you. Mine is ZZ, the worst, which is why I am quite sick in my mid 40's. I urge you all to find out more. I have a very good specialist here in the Waikato who is helping me as much as is possible. Keep asking your GP to refer you, or check out the internet for more information. It is not all doom and gloom. I am ore aware of air pollutant and irritants for me, such as perfumes, house hold cleaners. Obviously smoking is out, so the sooner family members know, the earlier they can begin to change their lifestyle.

My niece has it too. Unfortunately both her parents were dead before she found out. She was told that it often shows up when both parents have the defective gene. Her sister tested positive too but so far sister has had no problems. Alison is very allergic to anything scented, paint, cleaners, air fresheners etc. Things go not too badly when she can keep things like those at bay. not always easy.