Patient Comments: Alpha 1 Antitrypsin Deficiency - Effective Treatments

What kinds of treatment have you received for your disease caused by an alpha-1 antitrypsin deficiency?

Comment from: maggiemoouniverse, 45-54 Female (Patient) Published: November 14

Our sister passed away with Alpha 1 related panniculitis and was also lung affected and eventually liver and systemically eaten away before her death in 2000. She was not treated with augmentation therapy. I was tested and diagnosed with severe type PiZZ and lung affected. In 2013 there is still no therapy available for severely affected patients. All there is available are inhalers, nebulizer therapy and a once off lung rehabilitation course and home oxygen therapy.

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Comment from: 45-54 Female (Patient) Published: November 18

I just started 4 weeks ago with weekly infusion treatment of Prolastin c.

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Comment from: janquito, 45-54 Female (Patient) Published: November 18

I was diagnosed with this just this year. I was being tested because my liver enzymes kept being so high. I'm not sure if the doctor looked for this or if it just came to someone's attention. Lately I'd been having some breathing issues, the doctor said was allergy/physical asthma. I have an inhaler. I've been having more and more issues with being short of breath and use my inhaler more and more. It is hard to catch a deep breath. I'm not sure what's going to happen down the road but I certainly do not want a breathing problem.

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Alpha-1 Antitrypsin Deficiency: Symptoms Question: What symptoms did you experience with alpha-1 antitrypsin deficiency? How old were you when they appeared?
Alpha 1 Antitrypsin Deficiency - Genetic Testing Question: Have you had genetic testing for alpha-1 antitrypsin deficiency? If so, what were the results?

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