Carrie Richards – Niagara Falls, Ontario

Carrie winterWhen 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 fluids without severe discomfort. Shortly after this 2005 episode, she was diagnosed with PNH.

Carrie began to feel the effect of the disease on her body, experiencing lower back pain, bloating, depression, indigestion, jaundice, discoloured urine and kidney infections. Her condition deteriorating, she was hospitalized numerous times and she began to realize that her body was shutting down.

When Carrie was first introduced to eculizumab, the Ontario government did not fund the life-saving treatment through its public drug plan. At this time, patients without private health insurance were unable to receive the drug through public funding, and only some patients had access to the drug through private coverage. Fortunately, in November 2009, Carrie received her first infusion of eculizumab through the manufacturer on a compassionate basis.

The impact of the treatment on her health was immediate and dramatic. “My health almost instantly improved before the end of my first infusion,” Carrie recalls. Despite experiencing headaches during the first few days of therapy (a common but temporary side effect of eculizumab infusions), she required fewer blood transfusions over time. Her skin colour returned to a healthy, normal hue and her hemolysis disappeared. “I felt like I could do pretty much anything.”

Carrie played a key role in the fight for access to eculizumab for PNH patients, as she met with her MPP several times, and shared her story with local media to spread awareness of the issue and put pressure on government decision-makers. In July 2011, provincial governments across Canada made a landmark decision to fund eculizumab through their public drug programs. “Ontario announced funding for eculizumab on the day before my 29th birthday – it was the best gift I could have ever imagined. I finally felt safe.”

More positive life changes came for Carrie in 2013. She gave birth to a beautiful, healthy baby girl named Ava Leigh Morgan by C-section on September 9, 2013 at McMaster University Hospital. Throughout her pregnancy, Carrie continued to receive regular infusions of eculizumab at an increased dose, as well as bi-weekly blood transfusions and blood thinners as precautions. “The baby needed more blood than I could provide on my own,” Carrie says.

Though Carrie’s pregnancy was successful, it didn’t come without its challenges. Carrie recalls her pregnancy taking a toll mentally and physically, but a positive attitude helped her manage the condition while pregnant. “Try to keep your head up and know that it gets better.” She also credits her partner and family members for their steadfast support.

Now a proud mother, and enjoying a fulfilling career as a social worker, Carrie has returned to the regular dose of eculizumab and her health is back on track. “I’m feeling better than I have in a decade.” Carrie’s advice to others living with PNH? “Enjoy life and count your blessings daily. Take notice of the world around you, spend your time with positive people, ignore negativity and cherish every day.”

She describes her future in one word: optimistic. We wish you a happy and healthy future with your family, Carrie!