Highlighting personal experiences can often be an effective way to advocate for change. Dynamic visuals or compelling stories illustrating a day in the life of a thalassemia patient and their family can help highlight some of the key challenges and issues, and promote positive changes in treatment and care.

Jude’s Story:

“Thalassemia is a part of my life, but I don’t let it define me or change how I see the world.” Even as a little girl living with her family in Amman, Jordan, Jude loved to make art. Today, at age 32, she continues to live out her passion as the founder and principal designer at Toronto-based Sansa Interiors Inc. “My career allows me to combine the best of both worlds – art and design – to create exceptional spaces for our clients.”
As a business owner, Jude places importance on being open with colleagues about her health condition. “Everyone on my team knows I live with thalassemia and that I require regular blood transfusions every three to four weeks. It’s all built into the business schedule. When I’m at the clinic, I’m usually working anyway. I take my laptop with me and can be easily reached. Focusing on my latest design project while being transfused helps me pass the time while staying connected to work and family.”
Jude sees her openness to talking about her health condition as not only a key characteristic of her leadership style, but also an expression of her outgoing nature and how she communicates with others. But it wasn’t always that way. “Growing up in Jordan I remember not wanting to tell my classmates at school that I had a blood disorder. I feared their reaction, what they might think of me. Not a lot was known about thalassemia at the time, and I think there was probably a lot of stigma attached to it.”
Jude’s mother and father were among those in their community who were unaware of thalassemia prior to Jude’s diagnosis at the age of 2. “They were shocked,” explains Jude. “They told me that I had jaundice as a baby, but that everyone assured them it was perfectly normal and that they shouldn’t worry. I also was a very fussy child, sometimes to the point of refusing to eat. My mother took me to numerous doctors, yet no one could pinpoint the problem until a specialist determined I had thalassemia.” In the early days of her treatment, Jude relied on blood transfusions once or twice a year, until her need for transfusions became more intense. “Once I was diagnosed with beta-thalassemia my visits to the hospital became more frequent. I remember my entire family being in the hospital room with me. They even brought balloons to cheer me up! I never felt alone.” There is another reason why Jude has never felt alone as a patient. Shortly after she was diagnosed, her younger sister was found to have the same blood disorder. They started taking therapy together, always with the support of their mother who worked with
medical staff to ensure her daughters remained together during hospital visits. From then on, says Jude, she and her sister were inseparable.

The family emigrated to Canada in the early 2000s, eventually settling in Mississauga. At first, Jude says, her mother was uncertain about bringing her young daughters to a new country where she worried that the care they required would not be easily accessible. However, her mind was soon put at ease. “My mother went online and connected with the Thalassemia Foundation of Canada. Through that connection, she learned about the specialized care offered at the Hospital for Sick Children in Toronto. My sister and I entered the pediatric care program when we were in our teens. I was supposed to leave that program and transition to adult care at age 18, like other patients, but I insisted I would not leave my sister! So, they let me stay until I turned 20,” she laughs. “We have always been a team when it comes to our treatment.” Jude credits her mother, and the staff at SickKids, for her positive outlook on life despite the challenges of living with a rare blood disorder. “The nurses at SickKids were so gentle with us, so accommodating. My mother stayed on top of absolutely everything, recording our lab results and coordinating our appointments so that my sister and I could stay together. She was like our own private nurse. Without her care and support, I don’t feel my health would be as good as it is today.” Jude follows thalassemia-related issues closely, especially as they relate to new treatments and medical breakthroughs. “Even over the course of my own life, there have been changes in my treatment that have benefited me, given me more freedom. That’s why I don’t hesitate to ask questions and to speak to other patients about their experiences. I monitor my hemoglobin levels carefully and will call the clinic and ask for an earlier appointment if I am feeling especially tired. Moreover, I take a holistic approach to my health, ensuring that I eat well and exercise daily. After all, is there anything more important than one’s health?” When Jude is asked why it is important for her to share her story with others, she points to the work of the Thalassemia Foundation of Canada and the positive impact it has had in her life. “I love my career, but it does demand a lot of my time. Before I became an interior designer and business owner, I was very involved with the foundation in raising public awareness about this rare blood disorder. I even wrote a book about my own experience. It’s called Thalassemia: My Lifelong Companion. I donated all the proceeds from my book to the Thalassemia Foundation of Canada and to overseas charities that support children living with thalassemia.”
Jude’s approach to managing the demands of her treatment is simple: “Thalassemia is part of my life, but I don’t let it define me or change the way I see the world. Being open about my condition makes others appreciate me more as a person. People are more understanding than you may think.”