Written by Rebonto Haque
Edited by Anirudh Koneru
Published on 09/26/2020
In honor of International Ataxia Awareness Day (September 25th), Ishana, who has SCA2, is our rare star of the week! Ishana is only 19 years old, and we really admire her strength and strong will to speak out for rare diseases. Here is her journey and struggle with SCA2, a lesson on the importance of awareness.
Childhood—a time for learning and growth, a time to explore the world in all its beauty. The world holds so much potential, and every day, you master a task that, just the day before, seemed impossible. But things aren’t that simple for you; as you grow up, things don’t get easier; skills like walking and movement should become easier, more confident, but they don’t. You feel different- all the other kids think you are, and they aren’t afraid to show it. Their stares, their constant whispers, their callous disregard-it all makes you feel like an outsider. You feel like a burden to the people around you because you need their help to do things others can do effortlessly. Maybe you blame yourself. Why wouldn’t you? Your parents wrote it off as laziness, carelessness. Maybe they’re right. But maybe not...
This is the story of Ishana Sukhbir.
Ishana was always clumsy in her youth, something her parents didn’t really pay much heed to. Things remained largely the same until one day when her cousin, a doctor, convinced her parents to have her genetically tested. The results did not make things any easier.
Ishana was diagnosed with Spinocerebellar Ataxia type 2 (SCA2) , a genetic disorder typically affecting the muscles and coordination (for more information on this condition, visit our article on SCA2, as well the article on our other Rare Star with SCA2, Gary M. Johnson).
Unfortunately for Ishana, this is a disorder that hospitals in her country do not have the facilities to deal with, a result of the lack of awareness regarding this disorder in today’s world. This negligence not only impaired her physical wellbeing, but also had a significant impact on her daily life.
As Ishana was diagnosed at age 15, she had to deal with the harrows of being a teenager on now with the addition of her disorder. People often reject what they cannot understand, and for many of Ishana’s peers, her condition was difficult to process. A consequence of there being an absolute lack of awareness for a particular disorder is that people think that the individual suffering from said disorder is merely ‘faking’ it, failing to ever sympathize with those suffering from the disorder. As a result, Ishana had to deal with prejudiced classmates who’d tell her to leave her school, tell her to stop trying, laugh at her, and go out of their way to make her feel terrible.
Everyday tasks like climbing the stairs became more difficult, and many things that most people take for granted become impossible for her to do. “My classroom is upstairs and it's hard for me to reach it without help from my friends and this just makes me feel like a burden,” she says. Ishana’s pain and struggles weigh down on her mentally, as even just getting up everyday is difficult, and when asked about the challenges she faces she recounts “the struggle of wanting to never leave my bed when I get up every morning.” Despite all of this, all the pain, the animosity, she pushes on: she gets out of bed, even when it’s a constant struggle to garner up the strength to do so, and faces life.
Now, Ishana cannot write properly anymore and is even embarrassed at times to eat or walk in front of others, due to the way her movements have been impaired by SCA2. However, she still continues to stay strong and her will to advocate for rare diseases is truly inspiring. She is from Trinidad and Tobago, and has noted a large disparity in the awareness of rare diseases in her country. Ishana truly hopes that one day there will be more awareness in her country, as people usually do not concern themselves with rare diseases.
According to Ishana, the situation might have been different and a lot easier for her to deal with had people been more aware. She believes that if people were more educated about her disorder, they would show her compassion instead of antagonism, sympathy instead of vilification. “I wish the people in my country would be more aware of disability on the whole and instead of laughing or being disgusted, try to help people like me.”
And she’s not wrong; spreading awareness for diseases this rare is pivotal to helping those affected by them. Stories like Ishana’s help bring to light the struggles that otherwise remain obscure to the average individual. Her courage to be vulnerable, to tell us about everything she had and still has to go through, helps us recognize the pain many others feel, and tells us why we need to be better. She did her part, now it’s time to do ours.
Thank you so much Ishana for your bravery and contribution! You can find her on Instagram @shanss_19!
We believe these stories are important for others to hear, not only for awareness of the disease itself, but also for the support it provides to every patient. Thank you so much to all the people who share their stories with us! We truly appreciate your strength and not only are you contributing to our organization, but you are also furthering the awareness of rare diseases as a whole.
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Citations:
Sukhbir, I. (2020, August 12). Virtual Questionnaire through Google Forms.