Alpha 1 gene and COPD
I was diagnosed with COPD roughly 15 years ago. My COPD has been very aggressive in its advance. My pulmonologist couldn't figure out why at the age of 60 my COPD had been advancing so quickly. She had me tested for the Alpha 1 gene and the test indicated that I have the Alpha 1 gene. She said that the rapid advance of my COPD was due to the Alpha 1 gene. When a person is carrying the Alpha 1 gene it can cause that person to develop either lung disease or liver disease. Doesn't matter if you ever smoked or drank heavily in your lifetime. I was a smoker in my younger years but feel that I was already behind the 8 ball knowing what I know today. Is there anyone else that is plagued with this gene and dealing with COPD?
Hi
, and welcome! I see you are a new member here, having joined yesterday, later in the evening. We are glad to see you already engaging directly with the community through your first five posts. I am certain you will enjoy being a part of the community and conversing with both community members and COPD.net team members alike.
We actually have some material published (right here in COPD.net), which focuses on the genetic aspect of COPD. I thought you might gain some additional insight from any or all of them. You can access them here: https://copd.net/search?s=genetic%20copd.
I am also hopeful others in the community will see your question and respond by sharing their own personal experiences here as well.
All the best,
Leon (site moderator COPD.net)
I suggest you go to www.alpha-1.org. It's a website devoted to alpha-1 and has a tremendous amount of information available. They also used to have great education days in various locations around the country; my guess is that they do a lot of virtual things now. They really have good resources, not only for people with the emphysema associated with it, but also for the liver issues as well. If you have family members who might be affected, it has a lot of good information about getting tested, how to work with children who might be carriers or have one aspect of the disease or another, advice for families and lot of support available.
thanks for sharing that information. We also have some great resources for Alpha-1 right here on our page! They can be found: https://copd.net/living/tested, https://copd.net/clinical/alpha1-antitrypsin-deficiency, https://copd.net/living/alpha-1-diagnosis. All the best, Sam S. (COPD.net team). Hi
, and thanks for your comments and post. We here, at COPD.net, are very much tuned in to all aspects of COPD. I see my good colleague, , has responded to your post with some references of our own, right here on COPD.net and, you've already acknowledged it.
I also have something to contribute. I see the link you provided (www.alpha-1.org), is not a workable link in its present configuration. I have tried (several times, to access the well-known alpha site foundation with no luck, using that link!
I do not want that to be an issue for our members as well, so out of consideration, here is the link that works properly: https://alpha1.org/. Please note it is the https that makes this an accessible and secure site.
I appreciate everyone's patience.
Regards,
Leon (site moderator COPD.net)
Samantha, thanks for the reminder and I probably should have led with the information available on this site. The alpha-1 site is dedicated to alpha-1 only and I think it's important that people who have the genes know that it's available.
Hello,
! I have Alpha 1 as well. I was diagnosed in 2010. I’m here if you ever have any questions and feel free to message me. If you’re interested in some of the alpha 1 articles that I have written you can find them here https://copd.net/community/experts/jackie-english. You can also find great info at alpha1.org. I hope this helps! Best, Jackie (Moderator)
