Untreated

What Is Alpha-1 And Why Isn’t It Being Treated in Canada?

Photo by Nino Liverani on Unsplash

Shortness of breath, wheezing, coughing — sounds like COVID-19 symptoms, right?

Wrong.

Chronic bronchitis, liver disease, jaundice, recurring chest colds and pneumonia, decreased exercise tolerance, year-round “allergies”, swelling of the abdomen.

These are the signs and symptoms experienced by approximately 1 in 5,000 Canadians who suffer with Alpha-1 Antitrypsin Deficiency (AATD) and millions more world-wide. But you’ve never heard of Alpha-1, have you? Don’t feel bad. To my surprise, I found out that many physicians have never heard of the disease either.

“Doctors sometimes mis-diagnose the symptoms of an Alpha-1 patient for asthma or smoking related diseases such as Chronic Obstructive Pulmonary Disease (COPD),” says Angela Diano, Executive Director of Alpha-1 Canada.

Alpha-1 is a rare blood disorder, so of course like other rare diseases it doesn’t get the exposure, treatment and awareness of a world-wide pandemic. That doesn’t make it any less important or pressing.

There are many rare diseases that receive ongoing attention, as well as accessible, equitable treatment. This is not so when it comes to Alpha-1.