Patient Comments: Alpha-1 Antitrypsin Deficiency: Symptoms

What symptoms did you experience with alpha-1 antitrypsin deficiency? How old were you when they appeared?

Comment from: Tracy, 45-54 Male (Patient) Published: November 03

I was first diagnosed with alpha-1 antitrypsin deficiency when I was 42. I had pneumonia and it just wouldn't go away. We did the tests and found out I was ZZ alpha-1 sufferer.

Was this comment helpful?Yes
Comment from: pravin, 19-24 Male (Patient) Published: June 12

It's been a year and I couldn't get a bit of relief from chronic bronchitis caused by alpha-1 antitrypsin deficiency. And since 4 or 5 months, I can hear wheezing, and even a person next to me can hear as well. The doctor is treating me with same medication over and over again. I am having shortness of breath problem. I am so sick of this.

Was this comment helpful?Yes
Comment from: Patti1959, 25-34 Male (Caregiver) Published: July 14

My son, Tyler who is just 31, was recently diagnosed with alpha-1 antitrypsin deficiency. It showed itself after he had done two tours of duty in Iraq. It has been said that the chemicals and toxins he inhaled and ingested while there exacerbated his illness. He receives infusions weekly. He has lost 8 teeth during this time and a considerable amount of weight in a very short time. He has panniculitis and frequently develops boils. I do not know if the tooth loss and boils are related to the illness or not. He is on many medications, uses 3 inhalers daily and is fatigued most of the time. He tires easily. I am his mother and it was very difficult for me to hear he had this illness as I carry one of the chromosomes that caused this illness. His father carries the other. There are so many illnesses that can be cured; why can't this one? He is also on oxygen at night, has problems with sleep and is on a lung transplant list. My hope for him is to live a long happy life and be able to watch his 3 girls grow.

Was this comment helpful?Yes
Comment from: frank, 3-6 Male (Caregiver) Published: April 10

My son was diagnosed with alpha-1 antitrypsin deficiency shortly after birth when our very observant pediatrician noticed a difference between his conjugated and unconjugated bilirubin. He is not symptomatic so far, but I am vigilant about the lifestyle choices we are making for him; no one around who smokes, etc.

Was this comment helpful?Yes
Comment from: dancingrabbit, 55-64 Female (Patient) Published: December 04

I was diagnosed with exercise induced asthma at age eight and was treated with various asthma inhalers, etc., all my life. When they stopped helping, my doctor tested me for alpha-1 antitrypsin deficiency and I found out I had the ZZ genes associated with alpha-1. I have been on enzyme augmentation therapy for the past year. I am also going through cardio-pulmonary rehabilitation which has helped greatly with breathing techniques, life adjustments and improved fitness.

Was this comment helpful?Yes
Comment from: worried wife, 35-44 Female (Caregiver) Published: December 02

My husband was recently diagnosed with alpha-1 antitrypsin deficiency. I am scared to death of losing the love of my life. We have been together since High School.

Was this comment helpful?Yes
Comment from: ralph, Male (Patient) Published: January 05

I was diagnosed with alpha-1 antitrypsin deficiency 7 years ago. I had liver transplant 11-2014 and am doing well, I was very sick before transplant.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Alpha 1 Antitrypsin Deficiency - Genetic Testing Question: Have you had genetic testing for alpha-1 antitrypsin deficiency? If so, what were the results?
Alpha 1 Antitrypsin Deficiency - Effective Treatments Question: What kinds of treatment have you received for your disease caused by an alpha-1 antitrypsin deficiency?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors