1. < Autoimmune Diseases

Alpha-1 Antitrypsin Deficiency: Is it considered autoimmune?

Posted by marty1996 @marty1996, Mar 12, 2020

Is alpha 1 considered an autoimmune disease?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 26, 2021
In reply to @lindayoungquist "A-1-Antitrpsin. Value 66mg and Z is none." + (show)
@lindayoungquist

A-1-Antitrpsin. Value 66mg and Z is none.

Jump to this post

Hi Linda, welcome to Mayo Clinic Connect. Are you an alpha 1 carrier? How has it affected you?

REPLY
pip05 | @pip05 | Sep 27, 2021

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.

REPLY
dealeyplazamom | @dealeyplazamom | Aug 7, 2022
In reply to @sakota "Hi, I was diagnosed as a carrier of alpha 1. It is considered an autoimmune disease..." + (show)
@sakota

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.

Jump to this post

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.

REPLY
ialogic | @ialogic | Mar 5, 2023

It is related to GPA/ anca vasculitis, which attacks lung and kidneys.

REPLY
meq | @meq | Apr 11, 2023
In reply to @sakota "Hi, I was diagnosed as a carrier of alpha 1. It is considered an autoimmune disease..." + (show)
@sakota

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.

Jump to this post

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

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 12, 2023
In reply to @meq "I was diagnosed as a ‘carrier’ when my child was born severely ill with liver disease..." + (show)
@meq

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

Jump to this post

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.

--- 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?

REPLY
radiya | @radiya | Dec 8, 2023
In reply to @meq "I was diagnosed as a ‘carrier’ when my child was born severely ill with liver disease..." + (show)
@meq

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

Jump to this post

@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?

REPLY
View MoreView Less
Please sign in or register to post a reply.