Debunking Myths About Living With a Rare Disease

Since spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey.

To be able to share my experiences and stories for good is something that I am proud of (10-year-old Ainaa wouldn't believe she would be doing this). While we all may face challenges differently, we can choose how we narrate our life: to let things crumple us, or flip the narrative and do something positive out of it.

How it started

You see, I started with just ranting on social media, but I ended up creating awareness. The concept of “ranting” came to me while reading a storybook. Executing the inspiration became a complex layering of storytelling. Surviving this world challenged me throughout the entire process.

But after some time, the result is a story that I love: about living the life you want, not the one you’re given. I believe this arduous process allowed me to grow in writing content, demanding more of myself with each attempt until each word was expressed with the passion and intensity it deserved.

After all, awareness creates communities. My surroundings and people around me started to know about SMA. Even someone that I just met heard about SMA.

In the spirit of living with a rare disease, let me share with you to debunk what some people think about my condition.

Myths about SMA

Myth: Seeing a shaman will cure the disease

Growing up I didn’t know people with SMA, nor anything about SMA. Each time people asked “what's wrong with you?” my cliche answer was “I just cannot walk.”

That’s when random Aunties and uncles asked my parents to bring me to a shaman. Asking for advice and treatment to cure the SMA. There goes my parents searching for what the shaman needed. From “wearing these socks will help her walk, eat the goose eggs for a few days and you will see a difference, spray this water on the head every day to remove bad luck." All the stuff that you never heard, just name it - I have tried it.

I do understand the parents' love, that they will try anything so that their daughter's disease could be cured.

Myth: People with SMA cannot go to a mainstream school

Look, I am living proof that someone with SMA can go to a mainstream school.

This reminded me of my school experience. My teacher once told my parents to transfer me and my sister (who also has SMA) to a special needs school. My parents fought hard for us to stay in school. Doctors came to the school. Met all the teachers and principals; gave out a letter that I was fit to go into mainstream school. Okay not physically fit but mentally fit.

I did well in school. I went to university. I hold a degree in graphic design. I am making art for a living.

So who says people with SMA cannot go to a mainstream school?

Myth: People with SMA cannot make a conversation and decisions

A lot of times when I meet strangers they will ask the person beside me something straight away. Instead of asking me, they will speak with others. I guess I look invisible to them?

They will assume I cannot speak for myself. Please don’t assume that I or anyone else with SMA cannot speak or do something. I think SMA does not affect someone's ability to speak, learn, have conversations, or even be intimate with someone.

Trust me, you will be surprised at how much that person could do. SMA might have us, but that doesn’t define who we are. Never be too quick to judge someone based on their looks.

SMA can never take away my spirit

28 years have passed, and I navigated this rare disease through the trials and triumphs with the love that has been given. Though the world can be unfair and the journey has never been easy, resilience has been built.

I wouldn't have survived life without everyone who has listened, shared, supported, and advocated throughout this journey! I am forever grateful for everyone of these wonderful people (the list will be long if I have to list everyone's names). I can never thank everyone enough! Their support has guided me to who I am today.