Alpha-1 antitripsym deficiency
By latsmom
@latsmom (824)
June 9, 2007 7:25am CST
I was wondering if anyone else in mylot has been disagnosed with alpha-1-antitripsym deficiency. I had never heard of it until I was diagnosed a year ago. It is where the liver does not produce enough enzymes to repair the lungs after smoking, chest infections ect. If you ave been diagnosed what has your medical advisor done to help? I have read there are medications available in America but not in UK as of yet. If you are taking any such medications I would like to know a bit about them.
1 response
@VotreAmie (3028)
• United States
15 Jun 07
I have not been diagnosed with this and I'm not sure if what I am going to talk about is the same thing.
My mother has been diagnosed with NTM infections. It's a virus that she has in her lungs but they can never get rid of it. This disease is rare and in the beginning her doctors couldn't find out what the problem was. Well after some time, a new doctor tested her and found out that she had ALPHA. This alpha condition predisposes her to getting lung diseases. She has never smoked in her life. The virus comes from the water and is frequently found in Hawaii and Florida (humid places). Good luck latsmom.
@latsmom (824)
•
15 Jun 07
I do not know if it is the same thing, I am from the uk and have not heard that it comes from water but that it is genetic and to have it you need to have one parent with the same deficiency to inherit it, I do hope that your mom does find treatment, I know it is horible and debillitatingto have a lung problem, I was admitted into a mental institution at 14 as they thought it was that my asthma was stress related, it was a horible experiences especially to find out a decade later taht tehre was actually something causing me to be soo poorly for such a long time, I just hope the medication is available in the uk soon and hopefully fo your mom too.
1 person likes this
@VotreAmie (3028)
• United States
16 Jun 07
Alpha One Anti-trypsin deficiency can be treated with infusions of Prolastin, a product derived from the blood of various donors. It is processed to make certain there are no viruses or such in it and then via IV infusions it is given to those with Alpha weekly. This infusion replaces the missing enzyme and helps to better protect one's lungs. Having Alpha One predisposes one to emphysema and bronchiectasis, as well as non-tubercular mycobacterium infections. Alpha One is genetic and inherited. If one has Alpha One it is imperative one doesn't smoke.
@VotreAmie (3028)
• United States
16 Jun 07
By the way latsmom, the above comment is from my mother in-law. I asked her to write an answer to you. Take care.
