Living in Alexandra with a Rare Disease: A Story of Pain, Stigma, and Survival

A rare disease…

Where do I begin? Sometimes life forces us to live with our pain. No matter how many times you can smile on a random day, there is still that sad part of you that is hidden deep within. You learn to live with the pain simply because the world keeps moving. You go on living your life as if everything is normal but truly speaking, that is isn’t the case. It’s RARE.

The fact that I am able to put down my experience in writing of a part of me that I wouldn’t have shared with anyone on a normal day, means that I have finally found the courage and I am  hopeful that life will be kind to my dearest brother living with what I have now learned to be a RARE DISEASE.

Hluphi

To bring you into my world, I would have to paint a picture of the flashbacks of my younger self living in a household affected by a RARE DISEASE. I have always know my brother to be someone who suffers from a brain tumour. I have always known my brother to have an ongoing headache: - one that kept him in bed 24/7, one that caused him to scream and cry from the excruciating pain, one that meant that he couldn’t  chill outside with friends, one that caused him not to be able to pick up something from the floor, one that has caused him to go blind in his one eye, one that has people judging his physical appearance, one that has people talking about how big his eyes are, one that causes people to call him a giant, one that gets people curious about his way of life, one that has people thinking that he was bewitched, one that has affected his ability to enter into the open labour market, one that has caused him depression, one that has affected his self-esteem, one that has people thinking that he is inadequate, one that has people thinking he is lazy, one that has caused him to be misunderstood, one that had people thinking he is moody, one that isolates and excludes him from actively participating in society and economy, one that only affords him a temporary disability grant and not a permanent one, one that the State does not prioritise, one that has some public medical staff telling him that they cannot do anything for him, one that has medical personnel thinking his condition is too complicated, one that has exposed him to various medical conditions and complications, one that causes the State hospital to run out of medications, one that has the State hospital leaving him out in the cold, one that has caused him to never celebrate himself, one that has stolen his chance to chase his dream career, one that people never really understood, one that exposed him to bullying, one that has him thinking that his life will be cut short, one that is RARE. This documents our everyday life in the township of Alexandra. Previously, I would not have known what acromegaly is until the 22^nd of October 2025 when my brother came back from his usual check up at the hospital and he was down. He told us that this would be the final leg of his condition and that he might not make it. He further told us that he has never felt the way that he did, that something had changed and that he could feel that the bump in this head was growing, and it seemed to be growing in the upward direction. He described to us what this meant and that if it was indeed growing which growth would be confirmed by the medical report, it means that the tumour can no longer be managed by the medication.

I was completely heartbroken. I can’t imagine my life without my brother. On that evening, something hit me and I realised just how strong my brother has been. Dealing with that ONE ongoing and permanent headache daily disrupted his whole life, that ONE headache I have described in the various forms above. I knew on that day onwards that this was a call to me to stand up and fight for my brother. My brother has braved the storm all his life and that the call was unto to me now to be strong for him. I did not sleep that night, I thought of a conversation he once told me about wherein he asked his doctor if there were any support groups for acromegaly in South Africa and his doctor had no knowledge of same. That night I did some research on acromegaly and eventually I found RDSA online. The next morning we drove to Bryanston, which was an old address, I called and spoke to Nomsa, I was extremely broken and stressed out and she invited us for a brief meeting. Meeting Nomsa was the defining moment in our journey. That was the first time my brother shared his story and he highlighted the challenges of living with the disease. I made a commitment right there and then that I want to drive change in the community, raise awareness on acromegaly, offer my support and time to improving the life experiences of not only my dearest brother but all the amazing human beings that are affected by rare diseases. I committed myself to be open to learning in order for me to be the best support structure for my brother and the rare disease community.

Zelda, Hluphi's sister

My brother had his acromegaly surgery in the year 2004 and unfortunately the tumour was only partially removed as it was life threatening. His condition is now managed through medication. The symptoms persist and he is unable to work and participate in the open labour market. The downside is that sometimes the state hospital run out of medication and the temporary disability which he was granted for a year has since lapsed.

I keep on telling my family that I wish I had found RDSA much sooner. I am thankful to this wonderful organisation for giving us hope in our lowest moment and for the amazing work that they do for the rare community.

Rare is uncommon but rare unity beautiful souls in a remarkable way.