Drive to survive even when the challenge stack up

From an early age, I began finding lumps under my skin or deep in my muscles. At first, I was told they were simply fatty lumps and nothing to worry about. That explanation worked until I developed one under my left armpit. I had it removed, and only then was I informed that it was a schwannoma.

Later, another lump formed on my upper leg, and this time it was the size of a tennis ball. That triggered a deeper investigation, and doctors discovered that it was a growth on my nerve — and that the same was true for many of the lumps all over my body.

Over time, these complications became more serious, and I ultimately ended up with a permanent stoma.

Despite everything, I have never given up on life’s challenges. I am currently playing for the KZN Country Bowls A side. Pain is a daily struggle, but staying active is what drives me. It reminds me that I can still be strong, competitive, and capable.

My advice to anyone who finds lumps: do not simply accept a general diagnosis. Push for proper investigations. If only I had known earlier, things might have been very different.

What “equity” means in my story

Equity means recognising that we are all human and deserve to be treated and diagnosed based on our symptoms, not assumptions. We should be seen for what we present medically, not for the stereotypes or expectations people attach to us.

Day to day life

Staying active helps take my mind off the pain and discomfort. I refuse to let this condition define me.

Most of the time when I play bowls, I am uncomfortable or in pain, but I still push myself. It motivates me to show myself — and anyone watching — that I can compete and excel despite my struggles. I do not want my condition to be an excuse or a limitation.

Believe me when I say the pain, the stress, the stoma, and everything else I deal with every day are real. No one can take that away, but I choose how I face it. It is my burden, but also my fight.

Hope and strength

My condition cannot be cured. I can only take medication to manage symptoms.

My life cannot be compared to anyone else’s — better or worse — because you never know what battles someone else is fighting. When I see others living with their own conditions, I thank the Lord that I have the strength to carry mine, and I pray for them to have the same.

What I want others to understand about rare diseases

Neurofibromatosis Type 1 (NF1), formerly known as von Recklinghausen disease, is a genetic disorder that causes tumors to grow on nerves, skin, and other parts of the body. It is complex, unpredictable, and life altering.

People living with rare diseases need understanding, proper diagnosis, and compassion — not assumptions or dismissals.