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← Return to Alpha-1 Antitrypsin Deficiency - just been diagnosed
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Alpha-1 Antitrypsin Deficiency - just been diagnosed
Lung Health | Last Active: Oct 11 1:10pm | Replies (53)Comment receiving replies
Our three children are in their late 30's and early 40's. Thankfully, none of them have ever smoked. I already know that we are going to have a hard time convincing them that they should be tested. I broached the subject with them before I knew what my levels were and they think I am being an alarmist. They've never heard of Alpha -1 and like many "children" they think they know better than their mother and father. The fact that I have a terrible time walking up stairs or walking any distance doesn't seem to phase them. At this point I'm more worried about our grandchildren who range in age from six to nineteen.
Has anyone seen any information on how to convince reluctant adult"children" to get tested?
Replies to "Our three children are in their late 30's and early 40's. Thankfully, none of them have..."
I wish I did. I am a ZZ Alpha and I can’t convince anyone to get tested
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My son is a 44 y.o. ZZ alpha with liver & lung disease. The smartest thing we did in 2014 when he was diagnosed was established him at Mayo Jax with liver and lung Doctors. Today he is receiving weekly infusions for his lung issues and listed for a liver transplant. This is the testing process suggested for us.
First siblings to be tested, so if you have siblings they should definitely be tested.
Next your husband should be tested to determine if he has an Alpha gene. If he does there is an increased risk for your children having 2 alpha genes.
Since you KNOW you have an S & Z each of your children WILL have an S or Z since you get a gene from each parent. Meaning they are “carriers”
The problems arise from the fact that their is so much unknown about Alpha1 & why some people are more severely effected and others not. The only thing know for sure is if you have it you must protect your lungs from not just any tobacco products but also any airborne substances that could be harmful. And protect your liver from any medication prescribed or over the counter that could damage your liver. Yes no alcohol too.
You can get FREE anonymous testing from the alpha foundation.. they will also assist in getting the infusion meds approved from your insurance company.