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rare diseases: 'it can't just be, 'here is your transfusion'. we need to be supported'
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riyad elbard is the president of the thalassemia foundation of canada. supplied
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leading up to rare disease day on february 28, some of canada’s top rare disease advocates share how advocacy became a part of their lives, what they are fighting for and how they find optimism in difficult times.
thalassemia is an inherited blood disorder that causes the body to not produce enough hemoglobin, a protein that allows blood to carry oxygen throughout the body. there are three forms of the disorder — major, intermedia and minor — and treatment varies depending on symptom severity. this rare disorder affects roughly four in 10,000 live births globally.
healthing spoke with riyad elbard, who lives with thalassemia, about his advocacy work as president of the thalassemia foundation of canada.
this interview has been edited for length and clarity.
is there treatment for thalassemia?
treatment varies depending on how severe your symptoms are. for patients with thalassemia major and some with thalassemia intermedia, blood transfusions are required. but when you receive many blood transfusions, you’re at risk of having iron build-up in the body which can prevent certain organs from working properly. drugs are needed to combat this, which historically were administered by the patient themselves at home via injections or in the hospital through an iv. starting in the early 2000s, oral medications became available which many people now take.
in the 80s and 90s, there were very few treatment options to fight the iron overload we see in patients, and sometimes young patients weren’t injecting their medication frequently enough. thalassemia, at the time, was thought to be a childhood disease because many patients only lived into their teens due to iron overload [which can damage the heart, liver and endocrine system]. but if treatment is followed adequately, people with thalassemia can have a very close to normal life, which is what we’re seeing more of today.
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what are some of the challenges faced by the thalassemia community?
the number one challenge internationally speaking is early diagnosis, which is something we see with a lot of rare diseases.
another challenge is finding proper care, which is hard to access in canada unless you’re in a major city. transitioning from pediatric to adult care is another problem. sometimes there are no programs designated for adults, so where do kids go when they [get too old for pediatric care]? there needs to be comprehensive and multidisciplinary care across someone’s lifespan. thalassemia patients need to be monitored and there are several aspects of their health that can be impacted, so it can’t just be, ‘here is your blood transfusion and here is your medication’ — we need to be followed and supported.
what does the thalassemia foundation of canada do that you’re particularly proud of?
the foundation started back in 1982, and initially started out as a peer support group and has grown since then. a big part of our mandate is raising funds for research, and we’ve done tremendously with that. on average, we give out two or three research grants per year.
what are some advocacy efforts the thalassemia foundation of canada has focused on?
when i first started with the foundation as a volunteer in 1995, a big part of our advocacy effort was making sure blood was safe — you’ll recall in the 1990s there was the tainted blood scandal here in canada.
starting in the late 90s, we also advocated for toronto general hospital to have a larger thalassemia program. at the time, the number of patients was capped at around 99, which just wasn’t enough.
something else we’ve been advocating for over the past 15 years is access to drugs and innovative therapies, a common challenge among most rare diseases. we’re finally starting to see some therapies that are really promising for thalassemia.
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advocating for rare diseases can be tough. what advice do you have for other advocates?
the number one lesson i’ve learned is that change doesn’t happen overnight. advocacy takes time. when you’re advocating, you need to take a deep breath because you won’t wake up tomorrow and see all the changes you’ve wished for. i would also say perseverance pays off. keep trying, and eventually change will come.
what do you do for self-care?
in the summer i enjoy going for walks. my faith is also quite strong which has helped me through a lot of difficult situations.
what is your favourite treat?
it’s hard to pick just one. anything sweet — and a glass of wine, once in a while, is a nice treat.
vanessa hrvatin is a b.c.-based freelance writer.
interested in other stories about rare disease advocacy? read about catherine boivin’s life as an advocate for people living with spinal muscular atrophy, and john clark’s work in the myeloproliferative neoplasms community.
february 28 is rare disease day, a global movement focused on improving equity in social opportunity, health care, and access to diagnosis and therapies for people living with a rare disease. for ways you can support canadians living with rare diseases visit the canadian organization for rare disorders. click here to join cord as it launches the year of action to bring canada’s rare drug strategy from vision to reality on february 24 .
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