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Patient Stories

Garrett Shakespeare was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) 15 years ago. Now 26, this rare and deadly disease took its toll on his body and major organs for more than half of his young life. Once an avid »read more

When Niagara Falls native Carrie Richards was 18, she was diagnosed with Aplastic Anemia. After living with crippling fatigue and enduring regular blood transfusions, she was rushed to hospital, unable to swallow foods or »read more

Michele King of Red Deer, Alberta was diagnosed with the ultra-rare, progressive and fatal blood disease known as paroxysmal nocturnal haemoglobinuria (PNH) in 1990. Over time, Michele began to see and feel her body »read more

In March of 2013, Vancouver’s Tracy Murray began to experience severe fatigue, nausea, and abdominal pain and swelling. Concerned about these symptoms, she went to numerous walk-in clinics and was sent for blood tests to »read more

Toronto resident Hilary Handley is among an estimated 90 Canadians living with PNH (paroxysmal nocturnal haemoglobinuria). After the initial onset of symptoms, Hilary began to feel her body deteriorate and her quality of life »read more

Mark Brennan from Saint John, New Brunswick, knew that having dark, cola-coloured urine wasn’t normal. It took his doctors months to discover the cause of this strange symptom. In 2004, Mark was diagnosed with paroxysmal »read more

Donna Caffell has been living with the ultra-rare blood disorder called PNH (paroxysmal nocturnal haemoglobinuria) for over nine years, and is one of 90 patients in Canada with the disease. A resident of Hamilton, Ontario, she »read more

  The Canadian Association of PNH Patients works closely with a small community of patients living with this rare disease. This video tells the story of four patients – Lucas, Norma, Hilary and Barry – and urges »read more