Embracing my journey with spinal muscular atrophy: Zintle's Story

Zintle shares how the love and support of her family and friends has helped her to navigate life with a rare disease, and how important it has been for her to find ‘community’

As the lastborn daughter to Thomas and Nombulelo Sidzamba, I, Zintle, never imagined that my life would take a surprising turn when I was diagnosed with spinal muscular atrophy (SMA) type 4, in 2015. SMA is a rare genetic condition that affects the nerve cells responsible for controlling voluntary muscle movement, leading to muscle weakness and atrophy.

Starting university was a challenge—it was my personality that helped me juggle my academic responsibilities with my condition.

Before my diagnosis, I lived an active life, playing tennis, dancing and running with ease. However, as SMA progressed, my balance was impacted and I had to adapt to a new reality. Starting university was a challenge—it was my personality that helped me juggle my academic responsibilities with my condition.

At the University of Free State, I was part of the Student Representative Council (SRC) and even became a CUADS representative (Centre for Universal Access and Disability Support)  on campus, advocating for students with disabilities. CUADS is a programme that provides support and accommodations for students with disabilities, ensuring equal access to education.

I couldn't have navigated this journey without the unwavering support of my loving family—my parents, Thomas and Nombulelo Sidzamba, and my amazing siblings, Nobuntu, Mawethu, Abongile and Zomzi. Their encouragement and love have been my rock and I'm grateful to have them by my side.

Despite my achievements, I struggled to accept my condition, keeping it hidden from friends and acquaintances. It wasn't until a heart-to-heart conversation with my sister, Nobuntu, that I realised I wasn't alone. Her question, "Do you speak about your condition freely? I don't think you've accepted that you're living with SMA," sparked a transformation.

I began speaking openly about SMA, educating people about the condition and raising awareness on social media. My efforts caught the attention of my previous employer, HellermannTyton, who featured me in a global campaign to raise awareness about SMA in August last year.

Joining SMA Europe in May 2025 was a game-changer.

Joining SMA Europe in May 2025 was a game-changer. Being part of a community that understands my challenges has been liberating. I no longer feel offended when people stare or ask questions; instead, I use these opportunities to educate them about SMA.

My journey with SMA has taught me that being different is not a weakness, but a strength. I'm grateful for my supportive family, friends and the SMA Europe community, who have become my extended family.

As I look back, I'm proud of the progress I've made. I'm no longer the same Zintle I was last year. I'm confident, empowered and passionate about spreading awareness about SMA. If you know someone living with SMA, I encourage you to ask them about their journey. You might just learn something new.

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Zintle is a volunteer with the SMA Europe Youth Group.

Learn more about SMA Europe at sma-europe.eu

#WeAreOne

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