“Living an independent and successful life with thalassemia requires strength and resilience. These are the values my family instilled in me, and I continue to hold true to them today.” This is the message Amy shares with the people she meets as a longtime volunteer advocating for the needs of people who require life-saving treatment.
Amy was diagnosed with thalassemia at three weeks of age. After over 40 years of living with a rare blood disorder, Amy knows what it’s like to face significant health challenges. “In 2015, I was placed on a new drug to treat an excess of iron in my heart. I had an adverse reaction that essentially wiped out my immune system. Moreover, I contracted a rare fungal infection that almost killed me.”
Over the course of the next two years, Amy was in and out of hospital. She suffered a series of seizures and strokes, and required heart, brain and lung surgery. She ended up spending six months in an ICU.
Throughout that challenging time, Amy relied on three key life lessons:
1 – Motivate Yourself
Even though I’ve been going through a lifetime of hospital visits, I’m also in a unique position of power. I have the power to change the narrative around me. It’s OK to have bad days, but I learned not to only see myself as the ‘sick kid.’ Only you get to define what your life means, so go out there and defy the odds! Nothing is impossible.
2 – Advocate for Yourself
Thalassemia requires complex care, and the medical system has its limits. It has been important for me to take an active role in understanding my medical condition so that I can be my own advocate.
3 – Accept help
One thing is certain: It takes a village. Support from family, friends and clinicians is critical. Navigating a chronic illness is tough. I have no doubt in my mind that the reason I’m here today is because I’ve always had the full support of my family.
“My parents inspire me,” Amy explains. “As newcomers to Canada, they faced their own challenges. Yet, supporting me and advocating for me has always been a priority for them.”
Today, Amy holds a leadership position with the Canadian Red Cross where she works on youth engagement and other strategic initiatives. An outgoing person with an interest in humanitarian issues, Amy values her independence and takes pride in her South Asian heritage.
“Thalassemia is part of my life, but it doesn’t define me.”