Living With Thalassemia
Angelina was diagnosed with thalassemia at the age of 2, when her mother took her to the hospital after she fainted at home. “That’s when my parents first became aware of my illness,” explains Angelina. Over the next several years Angelina was re-admitted to hospital numerous times, finally seeing a specialist when it became apparent that her health was not improving. “I didn’t start actual treatment until I was in grade 9. It was only then that I really began to learn about thalassemia.”
Angelina’s parents were also learning more about their daughter’s rare blood disorder. “Practically everyone on my mother’s side of the family has thalassemia traits,” recounts Angelina. “It seems that, for the most part, their symptoms are mild. But in my case, I have thalassemia major, the kind that requires regular blood transfusions. Doctors have told me that I have a very rare form of the disease.”
Having grown up in the Greater Toronto Area, Angelina feels fortunate to have been referred to The Hospital for Sick Children for treatment and care. It was there that she received her first blood transfusion and started iron chelation therapy.
She vividly recalls what those early hospital visits were like: “I remember sitting in a hospital room waiting for my test results to rule out any allergic reactions to the treatment. It seemed like a long wait, although it was probably only an hour or so.” Angelina insists that she was never worried or scared. “I embraced my treatment because I knew it would make me feel better. And it did.”
Feeling better, in body, mind and spirit, has always been a driving force in how Angelina copes with her condition.
“As a child, I would often feel fatigued and have difficulty breathing. Starting treatment when I did was a turning point in that it led to improvements in my quality of life and validated what I was experiencing. To be honest, one of my main challenges was convincing others that my symptoms were real and affecting my day-to-day activities.”
Angelina tells the story of how, when she was at elementary school, she told a friend about feeling breathless and experiencing pain in her legs while running outside in the playground, only to have that same friend accuse her of being “dramatic.”
“Because thalassemia is an invisible illness, I would often get the impression that people around me did not believe I was living with a chronic condition,” she says. “Even today, I find that people who have never heard of thalassemia can easily underestimate the fatigue I and others like me can experience.”
Transition From Pediatric to Adult Care
As a young woman in her twenties, Angelina can still remember the transition from pediatric to adult care and the impact it had on her personally.
“When I first arrived at Toronto General Hospital after graduating from the program at SickKids, seeing a room full of adults when I was so used to being with other kids was jarring. I felt rather shy, so it took some time before I felt confident enough to get to know the other patients.”
Despite still being in high school, she was suddenly considered an adult and given more responsibility for staying on top of her chelation therapy. “I had had a few health scares in the past, so it was really important for me to adjust to the new environment and take my medication consistently.”
Although she acknowledges having struggled at times with the requirements for taking her medication, Angelina states that she never felt different from other so-called “normal” people.
“Those of us living with thalassemia are not so different from anyone else. We can accomplish great things in our lives, we just need a little help along the way.”
Whenever people ask Angelina about her coping strategies, she stresses the importance of a healthy lifestyle and staying active. “I work out and take care of myself. I want to live a long and healthy life.”
Today, Angelina is well on her way to earning a bachelor’s degree in anthropology from the University of Toronto. She is proud of everything she has accomplished so far although readily admits that finding a balance between the demands of her studies and her treatment regimen can be challenging.
“I go to the clinic about once every four weeks, depending on my class schedule and my other commitments. It can be hard at times, but I feel lucky to live within commuting distance from the hospital where I receive specialized care. There are very few clinics in the country that offer that kind of support. One of the reasons I became an advocate was to draw attention to the need for greater access to treatment and care, especially for immigrant communities at risk.”
Another problem, Angelina says, is the issue of drug coverage and how it affects students graduating from university or college who may no longer qualify for coverage under their parents’ private insurance plans.
“As I continue to meet and connect with other patients, my resolve to advocate strengthens. There are many niche aspects within the patient experience that remind me that I am not alone. But are hidden and should be brought to light. For example how to navigate medication without insurance coverage. What programs exist to support patients, what forms to fill, how often the process needs to repeat etc. It was stressful not having coverage and not knowing how long I would be without medication. After my experience I have a deeper understanding on the importance of patient advocacy and highlighting the need for education and awareness.”
Does Angelina have a Message for Other Post-Secondary Students Living with Thalassemia?
“Resources are available to help you obtain the accommodations you may need to be successful in your studies while at the same time taking care of your health. Talk to your doctor. Ask to speak to a social worker at the hospital where you receive your treatment. It’s up to you to take the first step.”
She also has this advice: “Reach out and connect with other patients who truly understand what you’re going through. Know that you’re not alone.”