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While many may have heard of sickle cell disease, an understanding of its life-altering trajectory and the agony it reaps is often lacking. At St. Joseph’s, pain specialists are part of a new, collaborative approach in London to improve care for a growing number of people living with the blood disorder.
When the pain would flare, a young Margot Harvey remembers wanting to die. She describes it as an excruciating jolt that surges through your body and makes you feel sick to your stomach.
Throughout her teen years, Margot went from one pain crisis to another and spent two weeks out of every month in hospital. She missed so much high school, it took her until age 21 to graduate. An attempt at college failed due to lost time from class.
“It’s disease I wouldn’t wish on my worst enemy,” explains Margot.
Margot, now 54, is referring to sickle cell disease – a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to tissues and organs throughout the body. Those with the disease have abnormal hemoglobin molecules, which can distort red blood cells into a sickle, or crescent, shape. These abnormally shaped red blood cells slow or block the flow of blood that circulates through the tissues and organs of the body, causing damage and severe pain from lack of oxygen and a wide range of disability and illness for those with the disease.
Pain is a hallmark of this multi-system disease. But after a lifetime of struggle, Margot is now benefitting from an armoury of specialized tools, strategies and expertise through St. Joseph’s Pain Management Program in collaboration with the Red Cell Disorders Hematology Clinic at London Health Science Centre (LHSC).