A SPECIAL INTERESTSECTION SECTIONBY BY MEDIAPLANET MEDIAPLANET A SPECIAL INTEREST
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LIVING WITH
SPINAL MUSCULAR ATROPHY
When Rebecca Van Fraassen was two years old she was diagnosed with spinal muscular atrophy (SMA), a rare genetic disorder. Mediaplanet spoke with Van Fraassen to learn about how living with SMA has impacted her as she grows older.
Physical Limitations Aren’t Stopping Rebecca Van Fraassen From Living Life to the Fullest Tell us a little bit about yourself, your health journey, and your diagnosis. I was born healthy. I rolled, I laughed, I crawled. It wasn’t until I was supposed to start to walk that my parents noticed something was different. My parents became concerned about why I was missing the milestones that a healthy child would have easily achieved. They brought me to see many doctors and specialists trying to find answers. I was diagnosed with SMA at the age of two. From the age of four my wheelchair has been a prosthesis for my legs. SMA interferes with my ability to get from place to place, and I depend on an electric wheelchair for my mobility.
What’s the biggest misconception about SMA? I face challenges on a daily basis and I'm perceived differently by others because I depend on a wheelchair instead of my body. I'm often looked at with sympathy and confusion when I pass people on the street, or awe and shock when I reference anything about my social life. My perspective as an individual who relies on a wheelchair provides a distinct lens to more accurately reflect the complexity of the aesthetic–affective process of discriminatory behaviour that creates
barriers of access to the environment. In my lived experience, the primary barrier I face with my disability is prejudicial attitudes, a product of historical segregation and invisibility formed on the basis of aesthetic difference. It's important to recognize that these barriers are constructed through systematic ideals, not the limitations of what's possible for me and my body.
Have you seen your condition impact you differently as you get older? Although I've always had some mobility, maintaining my independence has become increasingly challenging as I've gotten older. SMA is a disease that causes my muscles to slowly weaken over time, and it has taken away my ability to walk independently. My body has changed with my deteriorating muscles, giving me a curved spine and tilted hips from muscles that are too weak to support my body. It's impossible to have any real health of body and mind if you are found alone trying to heal from the diseases that arise from too much civilization and too little empathy. As humans we share passivity and vulnerability through our embodied experiences, while our practices have ethical implications for each other. It's important to bring attention
to how my condition impacts me differently as I age. As an artist, my work questions the relationship between representation and embodiment, in order to recognize society as a cosmology of individuals being in constant flux.
What advice would you give to Canadians who have recently been diagnosed with SMA or who have a loved one who has recently been diagnosed? While the body is a vessel to society for able-bodied individuals, transmitting the physical self to the environments we inhabit, the wheelchair is the legs of my vessel to the surrounding world. My wheelchair is designed for my individual needs and is customized for my body. When I think about my life, it doesn't incite direct associations with disability, but rather how I'm able to overcome the environmental limitations of society by my own body and mind. I believe there is a greater power in understanding my illness, that by locating my body in space I'm able to recognize my ability to act on the world. As an individual I hold my own power to seize life itself and to define my capabilities beyond the barriers of my environment.
Research and Development Are Crucial to Discoveries in Rare Disease Spinal muscular atrophy is a complex rare disease that affects approximately one in 6,000 babies born. Without treatment, it’s possible that children won’t be able to meet important developmental milestones like sitting up on their own or walking. Because of this, access to treatment is extremely important. We sat down with Susi Vander Wyk, the Executive Director of Cure SMA Canada, to understand how research and development could help increase access to treatment for Canadians living with rare diseases.
Susi Vander Wyk Executive Director, Cure SMA Canada
What does investment in Canadian research and development in rare diseases mean to you?
ment changes that fear to hope and planning for tomorrow.
Investing in rare disease research and development provides hope for a future for patients affected by rare diseases. Many of these diseases are progressive and debilitating by nature. Without the development and ultimate access to these therapies, the future is frightening for what it holds. Treat-
When talking about the future of gene therapies, what's the outlook from a patient perspective? Innovative treatments such as gene therapy completely change the course of the disease. We have patients who were fortunate to access gene therapy through clinical trials or a
managed access program who experienced meeting physical milestones that were absolutely unreachable to patients without access in the past. These families will never have to experience the devastation of helplessly watching their children grow weaker and weaker, and they'll never have to come to terms with the impact of the fear of illness and death of a member of their family.
Strategic Account Manager: Madison Trajkovski Strategic Account Director: Jessica Golyatov Country Manager: Nina Theodorlis Designer: Lauren Livingston Content & Production Manager: Raymond Fan Web Editor: Karthik Talwar All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve Toronto Star or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com. @MediaplanetCA
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