Yes.
I keep seeing people refer to themselves as “carriers”. This term is not applicable to Alpha 1. Even with only one affected gene you can have symptoms.
The term “carrier” should not be used in connection with Alpha 1 as people with only one affected gene can be symptomatic. It is more correct to say that you are an MZ Alpha or a ZZ Alpha
Yes I was diagnosed about 20 yrs ago. I developed acute enphasizma as result. I received 13yrs of prolastin IV treatments for my alpha 1. My mother passed at age 56 due to complications of liver failure due to alpha 1 as well as other major contributing factors. I'm 54 and I am a mirror image of my mother's health conditions. Thank you for your response much appreciated.
Most doctors consider Alph 1 to be an Autoimmune disorder.
Prolastin-C is great if you can afford it. Are you having trouble in that area? The switch that the manufacturer Grifols made in distributors was a GREAT one. Accredo is much more professional and even has backup nurses.
@meq I have the same story! This thread has been so great to find. my daughter is ZZ, and my other daughter, myself, dad are MZ. His mom his severely COPD, assuming she is MZ, ZZ, or MM but her doctor got false negative and apparently doesnt understand genetics. I am running my own labs for EBV and for Lupus APLs bc I have plumetting oxygen, splitting fingers, rashes, chest pain when I get COVID-like infections 6 times now (not always testing positive). I suspect EBV or CMV reactivation. COVID has hit the kids and I hard. The medical system has truly failed my case, I am a clinician (acupuncture/herbs/functional med/nutrition) myself, so I keep researching figuring out my own case to survive. It manifests for me as no lung distress, just plumeting O2 sat. Wondering if others have experienced this too?
By a “false negative” do you mean MM? There is nothing false about that unless you have a sibling who is a ZZ she may have COPD for a different reason.
MM + MZ yields MM or MZ
The other parent of your daughters should be tested. They are either MZ or ZZ
What is your Alpha 1 level?Have you had a PFT? What is your FEV? What is your O2 level? Did you ever smoke?
Hi, I was diagnosed as a carrier of alpha 1. It is considered an autoimmune disease and it affects your lungs and your liver. I have copd but they say its not connected with alpha one but who knows.
The term “carrier” should not be used in connection with Alpha 1 as people with only one affected gene can be symptomatic. It is more correct to say that you are an MZ Alpha or a ZZ Alpha
Hi @otterbein79 and welcome. I appreciate your underlining the nuances of Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic condition that is passed from parents to children through genes.
It sounds like you were symptomatic with one one affected gene. Are you MZ alpha or ZZ alpha? What symptoms led to your discovering the genetic condition?
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Yes.
I keep seeing people refer to themselves as “carriers”. This term is not applicable to Alpha 1. Even with only one affected gene you can have symptoms.
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1 ReactionThe term “carrier” should not be used in connection with Alpha 1 as people with only one affected gene can be symptomatic. It is more correct to say that you are an MZ Alpha or a ZZ Alpha
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1 ReactionMost doctors consider Alph 1 to be an Autoimmune disorder.
Prolastin-C is great if you can afford it. Are you having trouble in that area? The switch that the manufacturer Grifols made in distributors was a GREAT one. Accredo is much more professional and even has backup nurses.
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1 ReactionBy a “false negative” do you mean MM? There is nothing false about that unless you have a sibling who is a ZZ she may have COPD for a different reason.
MM + MZ yields MM or MZ
The other parent of your daughters should be tested. They are either MZ or ZZ
What is your Alpha 1 level?Have you had a PFT? What is your FEV? What is your O2 level? Did you ever smoke?
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1 ReactionWhat is your Alpha1 level.
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1 ReactionHi @otterbein79 and welcome. I appreciate your underlining the nuances of Alpha-1 Antitrypsin Deficiency (Alpha-1), a genetic condition that is passed from parents to children through genes.
Carrier is a term often referenced with genetic conditions, including alpha-1. For example:
- What is an Alpha-1 carrier? https://alpha1.org/about-alpha-1-causes/#:~:text=What%20is%20an%20Alpha%2D1,States%20are%20Alpha%2D1%20carriers.
- Alpha-1 Antitrypsin Deficiency https://www.nhlbi.nih.gov/health/alpha-1-antitrypsin-deficiency
Some people do not have any symptoms.
It sounds like you were symptomatic with one one affected gene. Are you MZ alpha or ZZ alpha? What symptoms led to your discovering the genetic condition?
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