Unleash. Believe. Shine.

Hlumela Tshijila
2h
3 min read

My name is Ruhan Adendorff, I’m 34 years old, and I have a rare condition called Sotos Syndrome. I want to share my story with the world to spread motivation, encouragement, and Sotos love to all my wonderful Sotos people across the globe.

My Journey with Sotos Syndrome

I was diagnosed with Sotos Syndrome when I was five years old. Growing up as a child with Sotos was not easy. In fact, it was very hard. At school I was bullied and made fun of. People would say things like:

“Why are you so slow?”
“He’s always last.”

Those words hurt deeply, especially when you are just a child trying your best.

Teachers and doctors told my parents that I needed special care, that I should go to a special school, and that I would never be able to do things like drive a car.But with pride I can say: they were wrong.

I finished high school in a mainstream school in 2011, I earned my driver’s licence, and today I am a cattle farmer.

Rare Diamond Recognition

In 2018, I entered the Rare Diseases South Africa Rare Diamond Awards. I was nominated for the Rare Diamond Warrior Award, and I was one of the finalists.

Imagine a farm boy from a rural area, with very broken English, standing in a room full of people in the city. I was extremely nervous. But when Nicole Capper, a Mrs South Africa and the first celebrity I ever met, called my name — I felt like I was walking on air. All eyes in the room were on me, and everything felt unreal. 😅

One day, I made a joke. We all know the word “rare” and what it means, but I told someone: "I’m not rare — I’m well done.” 😎

What Sotos Taught Me

It does not matter what rare disease you have. Deep inside you is your true identity — the part of you that is wonderful, amazing, and capable of shining brighter than you ever imagined.

“In a world of normal, rare can turn out to be the best thing the world needs.”

In March 2021, I joined the Sotos Syndrome Facebook group. It changed my life. Through Messenger, I met wonderful people from the USA, Slovenia, and all around the world.

From all of us with Sotos across the globe, we send the biggest Sotos love. 💘

My Message of Hope

There is always hope.Never get discouraged when things get hard.Never disappoint yourself by believing what others say you cannot do.

Life brings challenges, but you will get through them.Time is precious, but there is no need to rush. Everyone has their own time and place in this world.

Life isn’t a race. It is not about how fast or slow you go. Trust me — I know from experience.

Dream big and never stop believing in the things you can achieve one day. 💗

What Equity Means in My Story

To me, equity means fairness.People living with rare diseases deserve support, understanding, and motivation.Everyone deserves the same opportunity to be lifted up, no matter their struggles.

Day-to-Day Life

Sotos Syndrome comes with motor‑skill challenges and learning disabilities.For me, reading has always been my biggest struggle, and it affected my school years.But for every disadvantage, there is an advantage.

I have strong visual learning skills and a powerful ability to remember things I hear. These strengths helped shape who I am.

Hope and Strength

Family and friends are the foundation of love and support. Waking up every day and believing you are meant to be here is already a victory. Every day is a new step forward.