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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@waterboy, do you have a first name .. more personal. I am answering you on the MAC/Bronchiectasis Main Page BECAUSE we have quite a few Members with "Alpha1 antitripsyn deficiency" including myself .. I have: ALPHA-1 antirypsin heterozygosity, Z allele. If you use the magnifying glass up above putting in "Alpha antitripsyn" you will be able to find our various members with this issue. I WELCOME your information below .. thank you!
You say "I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own." Why don't you begin a discussion on this yourself under: https://connect.mayoclinic.org/groups/ .. you could contact Colleen Young to see if there is enough interest .. I am not really sure how/if this is possible but worth a shot. Sending you a hug! Katherine
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Posted by @waterboy, 52 minutes ago
I am a 67 yr old male with moderate COPD and am also an Alpha1 antitripsyn deficiency patient. Alpha 1 is a genetic disorder that effects the production of an enzyme in your liver that protects your lungs. You can be checked for free. It is somewhat rare, lucky me, 1/2500 people are Alphas. I have completed one study at Mayo in the Mindful Breathing Center concerning home exercising for COPD patients and am in another in the Morgan Stanley building… I strongly suggest you check them out… Pulmonary Research Center centering on Beta Blockers to reduce exacerbations. I just joined and was a little dismayed that the 3rd killer in the US doesn’t have a discussion of it’s own.
Replies to "@waterboy, do you have a first name .. more personal. I am answering you on the..."
@katemn how does knowing this help?
@boomerexpert, you said "@katemn how does knowing this help?" .. what was this in reference to? Your post did not say. Katherine
Looks like it got lost from the original post to which I replied...! I was referring to testing for Alpha-1 deficiencency
@boomerexpert, I am NOT an expert .. NOR a doctor but when I noticed on my genetic testing on 23andMe (a website that tests I think 1% of my genetic code) showed: "Detected mutation" is: PI*Z .. the most severe mutation .. increased risk for COPD. I then showed this report to Dr. Timothy Aksamit who showed a great interest in this genetic mutation and requested a copy of the report. Then in 2017 I met with Mayo Clinic Dr. Dulohery who notes in her bio: Interests Chronic obstructive pulmonary disease, Bronchiectasis, Alpha-1 antitrypsin deficiency, Asthma, Nontuberculous mycobacterial pulmonary disease.
I found it very interesting that an area of interest for her was: Alpha-1 antitrypsin deficiency. In correspondence she said: " If your testing indicated the Z mutation, we should complete full alpha-1 antitrypsin deficiency testing to determine which genes you have and if the level is low. I have added to blood work to your evaluation in July."
So @boomerexpert NOT being an expert I can only tell you .. a Mayo Clinic Doctor appears to be VERY interested in giving me FURTHER testing since my 23andMe testing DOES indicate the Z mutation. What all this means I do not have a clue since I am not a doctor nor an expert. I DO hope to gain further knowledge from Dr. Dulohery in coming months as it relates to my MAC and Bronchiectasis which I will share with our Connect Community. Katherine
Thanks, Katherine, and feel free to share after you doc visit...I'm sure you will!
@katemn Hi Katherine. As you know, Alpha-1 is near and dear to me so I
would be very interested in hearing about your dr visit in July.
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@katemn
They really do.