Alpha-1 Antitrypsin Deficiency Support Group

Alpha 1-antitrypsin deficiency (A1AD or Alpha-1) is a genetic disorder caused by reduced levels of alpha 1-antitrypsin in the blood. It can lead to emphysema and, in some cases, to liver disease. Symptoms of alpha-1 antitrypsin deficiency include shortness of breath, recurring respiratory infections, or obstructive asthma that does not respond to treatment.

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  • Blond54

    Known for 8 months I have Alpha 1

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    I got my genetic tests and I am PI SS. World renown doctor was asked from Alpha 1 Canada about my genetic type. He said in his opinion SS is as severe as ZZ. I am going to go see him in a couple of weeks in Toronto. His name is Dr. Chapman and he is the only Alpha 1 doctor in Canada that I know of. I have a lot of small red dots under my skin on my legs and arms. I catch every infection and take...
  • decoreilly

    Newly Diagnosed

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    Hi everyone, I have been recently diagnosed as having alpha 1 antitrypsin deficiency,  I have PiMS, I am awaiting an appointment with a professor to discuss this. I am not sure what having PiMS means, my liver tests were off over the last 6 months and that is why i was tested for alpha 1. My understanding was that having PiMS would not cause any major issues, some symptoms i have that may be...
  • rustyiron

    alfa1 with liver problems

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    Does anyone know what the symptoms are as far as digestion problems when this disease starts taking its toll on your liver. My brother died at 51 from this "lungs" but I have never smoked but for the past few years I cant eat any sugar or potatoes without being severely hung over. My blood sugar never goes over 200. Doctors are trying to tell me I am diabetic. So I am on Metformin but it does not...
  • saawweatpea

    Just diagnosed

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    I see nobody has written anything here in 4ever, but it's worth a shot to see if anybody looks or can direct me to a group that is active.I was just diagnosed yesterday. I'm 43 and my liver almost shut down two years ago. The only reason i'm diagnosed now is because of my trouble breathing so my doctor performed the blood test last week friday and i just found out yesterday. More am I...
  • deleted_user

    Low emzymes

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    Hello everyone. I was born with Alpha 1 antitrypsin deficiency with an mz frieno type. I have had no problems with my liver or my lungs. I just started with having shortness of breath like in the last 3 months. I have really bad anxiety on top of thatI went to the doctor and he didnt know weather i have lung problems or aszma. So i took a breathing test. Still havent got the test result. But i...
  • deleted_user

    Heterozygote s allele

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    anyone out there that has this one allele and has severe lung and liver disease?
  • deleted_user

    best friend recently diagnosed

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    Hello,My best friend was just recently diagnosed (he's 23) and already has asthma. He is taking the right step and is getting referred to a pulmonologist. He is sick right now (strep) and now is having trouble breathing. So I was just asking for suggestions of anything that helped make any of you that have had this disorder better. I will take any tips and tricks that you have for...
  • deleted_user

    Can anyone help

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    I recently had a blood test done which showed my Alpha 1 antitrypsin levels were at 0.79. I understand the normal range to be between 1.1 and 2.1.I have had a liver scan which was fine and my lungs feel ok and a chest ultrasound was normal.Do my blood results show that i have this illness or does further investigation need to be made ?I am so sorry but i am very confused as to whether or not i am...
  • I am new to the group, I am currently 36 years old and i was diagnosed around 2006 with alpha 1 mz. i first started having breathing problems when i was around 16. for around a month of that year i had severe breathing problems. the first episode i was asleep and woke up with my breathing completely shut off.. the episode lasted about 30 seconds and scared my grandmother to death... and these...
  • internettie

    Just did my AAT def test tonight

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    I found out through 23andme gene testing that I have the gene variant present for AAT. I am MZ. I found a study through the Alpha-1 Foundation where I could do a test for free to find out if I actually have the deficiency. It was just a finger poke test but I'm so dehydrated that I had to poke 6 fingers to get enough blood to fill the 3 circles. I'll be mailing the test in tomorrow morning. My...
  • deleted_user

    Recently diagnosed, questions

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    Hi everyone,I am sad to be here in this support group but happy it's here. One never thinks they're going to be diagnosed with a potentially life threatening disease.I just had my second appointment with a liver specialist for Hepatitis C. During all the blood work they found out I have Alpha 1, Genotype ZZ. This has just thrown me for a loop.I have a lot of questions and most of the...
  • HolisticStacey

    Take control of your life

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    I just wanted to share with all of you my story. I was diagnosed with Alpha One Antitrypsin at the age of 13. I was told that I would need a live transplant and would not be able to have children. Being young and stupid, I was careless throughout high school and my spleen grew triple the size of a normal spleen. About three years ago my boyfriend Kevin introduced me to his health company and I...
  • deleted_user

    ZZ and severely low levels

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    I just found out I am ZZ and got my results back for my AAT levels. I'm 5.2 um or approximately 32 mg/dl. I have read online anything under 11 um is concerning. I'm 33 with three young children. I'm super nervous about what's next or what to expect. I made an appointment with a doctor on the alpha1.org website, they call tomorrow to do a medical history before even making the official...
  • deleted_user

    Finance just diagnosed with ZZ

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    Hello,My 43-yr old fiance was just confirmed as having alpha-1 ZZ (the worst type). She only was tested since her brother is also positive. She has no significant symptoms and is very active and fit. I'm very worried about this diagnosis and will try hard to get approved for infusions. Does the current thinking indicate that the infusions can arrest the deterioration of lungs/liver or just...
  • deleted_user

    Alpha resources

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    http://www.alphanet.org/ has a huge online resource and informational data base for alpha patientshttp://www.prolastin.com/ has a lot of info on augmentation therapyProlastin is the original augmentation therapy and has by far the best track record - home infusion services can be arranged via Centric Health Resources at http://centrichealthresources.com --- services available throughout the...