COPD & Emphysema Support Group

COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...

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tillerc 03/08/2016

Please how many have been diagnosed with this genetic disorder.It Causes COPD ETC. If you haven't been tested please do because they are finding that it is familial and we pass it to our children. There is no cure, but they think if caught early they can slow the progression.

not so mighty midget

redvelvetcake 03/08/2016

I need to get tested for this. My doctor says I don't need it though because my lung function test is good (for asthma). But my father had COPD and so did his father. It could have been the smoking that caused it but also there was a lot of contact with chemicals in the military for my dad and other industry chemicals and perhaps even it was genetic all along. Maybe I can ask my general doc...but I'm not ready yet. How do you get yourself ready for such a test?

HUGS.

jarca 03/08/2016

I was tested for it because my oldest sister, who had never smoked a day in her life, died of COPD the year before I was diagnosed.

It was a simple "finger prick" and nothing scary.

I was negative, but I agree it is a good test to have done.
(i believe alpha-1 also causes a liver disease also)
Even if you have the gene that doesn't necessarily mean you will get this disease, but having this simple blood test can warn our future generations to be on the look out for it to get early treatment.

red; it's just a simple blood test done at your pulm's office and you get the results in about a week.
There is really nothing to get yourself worried about, because it is just like having a mamogram or pap smear; ya get it done, most the time it is negative, but if it's not then early treatment is the key (((HUGS)))

deegran 03/09/2016

I am alpha-1 antitrypsin deficient. It causes emphysema. My children are all carriers - which makes them halfway deficient. So their livers make about half as much of the protein as normal. My liver makes very small amounts of the protein. So I get an intravenous infusion of alpha-1 antitrypsin protein every week for the rest of my life.

It's good my kids found out because they can take care of themselves appropriately.

I suggest getting tested. It's an easy test, like jarca said. Just a needle prick on the finger. It's a little scary to get the results. If you're positive it's a bit of a lifestyle adjustment. But way better to know. And there are lots of support groups for this disease. Lots.

boldprint 03/09/2016

Not only is it a simple, pin prick test, it is also cheap. In fact, I got mine free at a wellness fair at the mall.

redvelvetcake 03/11/2016

I'll have to check out a local fair if my doc won't order it for me. Thank you.

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