Every Breath Counts. Let’s Raise Awareness
Rare Disease Campaign: February 1 – 28
1 in 12 Canadians is living with a rare disease- that’s 3 million people! Many face their journey feeling alone, without the answers they need, and often waiting too long for a diagnosis or treatment. But together, we can change that.
February 28 is Rare Disease Day. Join us during February as we raise awareness, support, and hope for people navigating rare medical conditions like pulmonary fibrosis (PF) and connective tissue diseases that may lead to PF.
Early Detection is Key
Since it’s a rare disease, PF is not top of mind for most family practitioners. The 2024 CPFF Patient and Caregiver Survey highlights that many patients wait two or more years for a confirmed diagnosis.
PF symptoms cannot be reversed by the treatment medication, only slowed down. More awareness by the public and medical professionals can result in earlier diagnosis so treatments can start sooner for patients at a less severe stage of the disease.
Tackle the Crackle
Early detection is vital to slowing down the disease, so primary care professionals as well as all Canadians need to know PF can start with these common symptoms:
Persistent cough that won’t go away after more than 3 months
Shortness of breath after physical activity that was typically not a problem
Ongoing fatigue, weight loss
If you have any of these symptoms ask your Dr. to listen for the tell-tale lung crackles.
Living with a Connective Tissue Disease?
Know Your Risk of Pulmonary Fibrosis
Connective tissue diseases (CTDs) are autoimmune diseases that fall under the umbrella term of interstitial lung diseases (ILDs).
It’s important to know your condition can sometimes progress to pulmonary fibrosis. The chances of getting progressive PF varies according to your connective tissue disease.
Catching early lung changes is vital because once the lungs become scarred by PF it’s irreversible.
Each CTD with PF has different characteristics and treatment pathways
Early PF diagnosis is vital to determine the right treatment pathway and slow down PF progression.
Tune in as Dr. Janet Pope shares what you need to know about interstitial lung disease (ILD) in connective tissue diseases.
Hundreds of thousands of Canadians suffer from connective tissue diseases such as rheumatoid arthritis, myositis, lupus and scleroderma. Some may progress to pulmonary fibrosis.
Celebrating Rare Individuals
Despite challenges, people living with PF show amazing determination and courage. Explore patient and family stories and learn more about pulmonary fibrosis.
Pay Tribute to a Rare Individual
MAKE A DONATION TO SEND A TRIBUTE OR MEMORIAL CARD
