My very close friend has it and it's classed as an Hereditary Genetic Disease passed down from parent to child. Some are carriers. As is her Son. She lost her brother to it 3 yrs ago. She is being worked up for double lung transplant next year.
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.
As a carrier, I’m not sure that COPD would be related, but COPD is absolutely related to AAT. Also, the Z phenotype is the worst of them. ZZ is the worst of them, then SZ, then MZ.
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.
I was diagnosed as a ‘carrier’ when my child was born severely ill with liver disease and eventually diagnosed with A1ATD whilst we lived-in at The Royal Children's Hospital here in Australia…
He is in remission again, and since then I have shown to have A1ATD and go in and out of remission… at the moment I have liver disease and Emphysema, had Asthma since very young…
There are more questions than fixed answers, as individual as we are… I have found.
This is my first time in a conversation with anyone else with this disease.
So I am a little clumsy about it.
Stay as well as you can
I was diagnosed as a ‘carrier’ when my child was born severely ill with liver disease and eventually diagnosed with A1ATD whilst we lived-in at The Royal Children's Hospital here in Australia…
He is in remission again, and since then I have shown to have A1ATD and go in and out of remission… at the moment I have liver disease and Emphysema, had Asthma since very young…
There are more questions than fixed answers, as individual as we are… I have found.
This is my first time in a conversation with anyone else with this disease.
So I am a little clumsy about it.
Stay as well as you can
Welcome @meq, I'm happy to see that you have connected with @sakota. You are right about there being more questions than answers for each of us no matter the health condition. I posted a link to the Alpha-1 Foundation that you may find helpful if you haven't already seen it.
I was diagnosed as a ‘carrier’ when my child was born severely ill with liver disease and eventually diagnosed with A1ATD whilst we lived-in at The Royal Children's Hospital here in Australia…
He is in remission again, and since then I have shown to have A1ATD and go in and out of remission… at the moment I have liver disease and Emphysema, had Asthma since very young…
There are more questions than fixed answers, as individual as we are… I have found.
This is my first time in a conversation with anyone else with this disease.
So I am a little clumsy about it.
Stay as well as you can
@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?
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.
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.
Thank you all for your comments😉
Is anyone aware if this autoimmune difficiency will further effect other organs as it progresses such as the pancreas and our kidneys. My organs have decided it's time to battle for position😎
Connect
Connect
Like
Helpful
Hug
Hi Linda, welcome to Mayo Clinic Connect. Are you an alpha 1 carrier? How has it affected you?
-
Like -
Helpful -
Hug
1 ReactionMy very close friend has it and it's classed as an Hereditary Genetic Disease passed down from parent to child. Some are carriers. As is her Son. She lost her brother to it 3 yrs ago. She is being worked up for double lung transplant next year.
-
Like -
Helpful -
Hug
1 ReactionAs a carrier, I’m not sure that COPD would be related, but COPD is absolutely related to AAT. Also, the Z phenotype is the worst of them. ZZ is the worst of them, then SZ, then MZ.
-
Like -
Helpful -
Hug
1 ReactionIt is related to GPA/ anca vasculitis, which attacks lung and kidneys.
I was diagnosed as a ‘carrier’ when my child was born severely ill with liver disease and eventually diagnosed with A1ATD whilst we lived-in at The Royal Children's Hospital here in Australia…
He is in remission again, and since then I have shown to have A1ATD and go in and out of remission… at the moment I have liver disease and Emphysema, had Asthma since very young…
There are more questions than fixed answers, as individual as we are… I have found.
This is my first time in a conversation with anyone else with this disease.
So I am a little clumsy about it.
Stay as well as you can
-
Like -
Helpful -
Hug
4 ReactionsWelcome @meq, I'm happy to see that you have connected with @sakota. You are right about there being more questions than answers for each of us no matter the health condition. I posted a link to the Alpha-1 Foundation that you may find helpful if you haven't already seen it.
--- Alpha-1 Foundation: https://www.alpha1.org/
I'm sure others may also have questions. Are you able to share some of the questions you have?
-
Like -
Helpful -
Hug
2 Reactions@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?
With Alpha 1 it is actually incorrect to call a person with only one affected gene a “carrier” as they can have symptoms as well.
Alphas with only one affected gene can be symptomatic.
Only liver and lungs