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AlphaNet Canada

Improving the lives of Alphas

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic (inherited) condition – it is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age.

3%

Up to 3% of all people diagnosed with COPD may have undetected Alpha-1.

Dr. Kenneth Chapman
& Angela Diano

Dr. Kenneth Chapman
& Angela Diano

Dr. Ken Chapman, a clinician and global leader in alpha-1 antitrypsin deficiency research, directs AlphaNet Canada in sharing research and disease management information with Canadian patients. He works alongside Angela Diano, Executive Director, who is committed to ensuring equitable access to testing, treatment, and support. Together, they strive to improve the lives of those affected by alpha-1 antitrypsin deficiency in Canada, supported by AlphaNet Canada Coordinators nationwide.

Alpha-1 patients

How does AlphaNet
Canada help Alphas?

By staying connected and subscribing to AlphaNet Canada, patients play a vital role in helping us identify the number of Canadians diagnosed with Alpha-1 and better understand your specific needs. This information empowers us to advocate more effectively on your behalf, especially when engaging with provincial and territorial governments to secure access to new and innovative therapies for Alpha-1 patients across Canada.

Through our tailored disease management services, we offer patients a comprehensive range of resources, including essential information, education,
and personalized support. Our goal is to empower and guide them every step of the way on their healthcare journey.

We actively engage with physicians and the broader medical community, serving as a vital resource for up-to-date information and fostering collaboration to improve patient care.

We offer comprehensive health system navigation, empowering patients to make informed decisions about their treatment options and receive the best possible care.

Guides to living with Alpha-1

Living with Alpha-1

Get access to the comprehensive Big Fat Reference GuideTM (BFRG).

Skinny Little
Reference Guides

Topic specific guides to meet your needs.

FAQ

Is your asthma or COPD hereditary?2024-10-23T12:59:32+00:00

Your asthma or COPD could be a serious hereditary disease called alpha-1 antitrypsin deficiency.

Alpha-1 antitrypsin deficiency, also called Alpha-1, A1AD or AATD is a common serious hereditary disorder and can result in life-threatening lung, liver or skin disease. Knowing that you have Alpha-1 opens up many lifestyle and treatment decisions as well as the knowledge to avoid risk factors, all of which can improve your quality of life.

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 cannot 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 and rarely a form of panniculitis, a skin disease.

While it is important to know that not everyone who has Alpha-1 will develop symptoms, even people who are ‘only carriers’ can develop symptoms. We do know that early detection, treatment and lifestyle changes can make a dramatic difference in the progress of the disease.

As a result, the sooner a diagnosis is made the more effective lifestyle and treatment options will be.

Who should be tested for A1AD?2024-10-23T13:00:37+00:00
  • The World Health Organization (WHO), the American Thoracic Society, the European Respiratory Society and Alpha-1 Canada recommend that everyone with COPD be tested for alpha-1 antitrypsin deficiency
  • everyone with emphysema, chronic obstructive pulmonary disease (COPD), chronic bronchitis or asthma that is not fully responsive to treatment
  • individuals with bronchiectasis
  • newborns, children and adults with unexplained liver disease
  • individuals with a family history of liver disease
  • blood relatives of persons diagnosed with alpha-1 antitrypsin deficiency
  • anyone with panniculitis, a skin disease
What are the common signs and symptoms?2024-09-09T19:38:18+00:00
  • family history lung disease
  • rapid deterioration in lung function with or without a background of significant smoking or occupational exposure to lung irritants
  • asthma that is not fully responsive to treatment
  • shortness of breath or awareness of ones breathing
  • decreased exercise tolerance
  • recurring respiratory infections
  • chronic cough and sputum (phlegm) production
  • family history of liver disease
  • unexplained liver problems
  • elevated liver enzymes
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