I've always struggled with stories about COPD -- the new name for what we used to call chronic bronchitis and emphysema. Under its new name of Chronic Obstructive Pulmonary Disease, it's a mouthful that's often hard to sell to news editors who have never heard of it.

But the new study in the journal The Lancet, by the Institute for Clinical and Evaluative Sciences, should help put the disease into focus for a lot more people.

It's a novel way of looking at its prevalence and impact by calculating the population's overall risk of developing COPD. So as you look at the risk of various health problems over the entire country, the stats that emerge are pretty sobering.

About one in four Canadians will develop this serious disease over their lifetime.

The researchers added a surprising bit of context -- the risk of COPD then becomes twice that of developing heart failure. And three times the risk a woman will develop breast cancer, or that a man will develop prostate cancer.

That should cause people to think.

The researchers also want governments to consider the health-care costs of all the people who may develop this costly disease. COPD patients have difficulty with daily activities. Their lungs don't process the same amount of oxygen as a healthy person. It makes it harder for them to work, to care for themselves. Often they end up on oxygen. Many times they end up in hospital.

Of course, smokers and former smokers are at greatest risk. So doctors say anti-smoking programs are critical. Smaller risk factors are exposure to smoke and chemicals in the workplace. Another, newer threat -- chronic severe asthma -- leads to multiple lung infections. If this is the case, the numbers of people with asthma is growing. So too will those afflicted with COPD.

Those we spoke to for the story say there is a deep need for research into how and why the lungs become so damaged, and better treatments. But one of the causes of COPD I had not heard of is a HEREDITARY form caused by a genetic defect, called Alpha 1.

The patient in our story tonight, Eileen Anderson, has genetically-induced COPD. A gracious, elegant woman of 64, she has been in hospital 11 times over recent years, unable to breathe.

She has been in West Park Healthcare Centre, a hospital specializing in COPD, since August 8. Intensive rehab programs have helped to wean her off 24-hour dependence on oxygen. She hopes to leave hospital in a few weeks.

It seems to have become her mission to let Canadians know about COPD and, in particular, her form of the disease. She tells me about 700 people have been formally diagnosed with Alpha 1 Antitrypsin Deficiency -- using blood tests to detect the genetic flaw. But she says doctors suspect there are closer to 10,000 people affected. Yet it's often misdiagnosed as asthma or allergies … but it defies treatment.

I asked her to write up something about her illness and am attaching it here, in hopes it helps someone:

The roots of your COPD problems may be in your family tree.

Alpha-1 antitrypsin deficiency (alpha-1 for short) is an inherited disorder that can cause early onset, irreversible COPD, or chronic obstructive pulmonary disease. It is in your genes, so it is not something that goes away.That also means that you and your siblings might pass this onto your/their children or grandchildren.

Everyone's liver produces alpha-1 antitrypsin (AAT). The job of AAT is to protect the body from inflammation, especially in the lungs. In people with alpha-1 their AAT is malformed and can not be released by their liver. Most commonly this leads to lung disease but the build up of AAT in the liver can also lead to liver disease.

Over 20 years ago, after many complications with my health and many physician contacts, I found out I had Alpha-1. From the time I started experiencing symptoms of breathlessness in my 30s to the time I was diagnosed took 12 years. This came after 10 years of allergy shots, numerous misdiagnosed asthma flair ups, overall chronic lung problems with extensive use of cotersteroid inhalers, antibiotics, emergency room visits and hospitalizations.

There is an easy way to find out if you have this inherited disorder and that is by having a simple blood test. For more information about testing, contact Alpha-1 Canada at 1-888-669-4583 or visit the website. The Alpha-1 Canadian registry provides information on research and testing, and you can visit their website or call 1-800-352-8186.

If you are experiencing asthma that doesn't get better with medications, emphysema with or without a history of smoking, bronchiectasis, allergies that last all year and never seem to go away, a newborn, children or adults with unexplained liver disease ask your doctor about being tested..... Take the opportunity to educate yourself with the help of Alpha - 1 Canada to stay informed as to how you can best protect your health now and in the future.

Generating awareness from a personal perspective,

Eileen Anderson