For some, pain strikes without warning — sharp, stabbing and sudden.
For others, the pain never really goes away. It is pain that defies description and is even more difficult to experience, day in and day out, with little hope for relief.
This is life with sickle cell disease, a hereditary genetic condition that affects the shape of red blood cells.
But there is much that can be done to fight this disease.
Generating awareness is a crucial first step. While it is the most common genetic disease, it affects only about 5,000 Canadians and risks being overlooked when doctors attempt to diagnose patients.
In fact, most Canadians are unaware of what sickle cell does and how damaging it can be.
That’s why I have worked with the Sickle Cell Association of Canada to create a bill that would designate every June 19 as National Sickle Cell Awareness Day in Canada. This is a date that is already recognized by organizations like the United Nations, the World Health Organization and the African Union.
Bill S-211, National Sickle Cell Awareness Day Act, has already passed the Senate and is now at third reading in the House of Commons.
In my view, the more we know about an issue, the more power we have to effect change, whether that change is in our policies, our institutions, or our understanding.
What is sickle cell disease?
People with the disease have stiff and sticky sickle-shaped red blood cells that do not flow easily through blood vessels. The sickle-shaped cells only have a lifespan of about 20 days; healthy red blood cells — which carry oxygen throughout the body — have a lifespan of about 120 days.
The consequences of having blood vessels clogged with decaying sickle cells means the body can’t get enough oxygen. This in turn leads to damage to shoulder and hip joints, organ damage, and severe pain.
During a Sickle Cell Disease Association Advocacy Day event on Parliament Hill last year, I met a young man who, at 17, endured a hip replacement because of the disease.
He was inspirational — a courageous youth who has managed to remain positive about his situation.
But a 17-year-old should not have to endure a hip replacement.
He is one of the people who deserve credit for this bill. It is a privilege to be able to assist him and all of the other optimistic people I have met who have sickle cell disease and who are advocates for sickle cell awareness.
One thing I would like to see is universal newborn screening for sickle cell disease. This would help catch carriers early and ensure prompt treatment. A lack of knowledge can lead to misdiagnosis or ineffective treatment when symptoms begin to manifest later in life.
Ultimately, it is my hope that by passing Bill S-211, Canadians become more aware of the disease and they take steps to help those who have sickle cell.
Senator Jane Cordy represents Nova Scotia. She is deputy chair of the Senate Committee on Internal Economy, Budgets and Administration.