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Donna Caffell – Hamilton, Ontario

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 was diagnosed with PNH after having a heart attack at a friend’s cottage. It was after this event that doctors discovered that she had PNH.

Donna experienced numerous health complications, including blood clots – one of which led to a stroke a year after she was diagnosed.  She has also been living with Crohn’s Disease, a form of inflammatory bowel disease affecting the intestines, since she was 25.

For over a year, Donna has been receiving infusions of Soliris, a life-saving treatment for PNH. The treatment prevents her red blood cells from being destroyed by haemolysis, a  symptom of the disease. She feels that Soliris is saving her life, and she no longer lives in fear of developing a deadly blood clot, or experiencing another stroke as a result.

In January of 2011, Donna’s private health insurance carrier and her husband’s were involved in a dispute over who should cover the cost of her treatment. Since the Ontario  government did not cover the cost of Soliris for patients, Donna’s life hung in the balance. Thankfully, her husband’s carrier agreed to continue to provide treatment, and in July 2011, provincial governments announced their decision to provide public funding for Soliris for all PNH patients. She continues to live well with the benefits of Soliris each day.

Donna and her husband Chris have been active advocates for public access to Soliris for all PNH patients in Canada, and played a key role in urging the Ontario government to ensure that all PNH patients have access to this treatment.

Donna shares her story with the media below:

Hamilton Spectator: March 25, 2011
CHCH Hamilton: April 7, 2011
Hamilton Spectator: August 3, 2011