Tshepo Mokabane: From a VMMC Room to Hope
Tshepo Mokabane, Demand creation Coordinator at Pulse Health, shared a post on LinkedIn:
“From a VMMC room to hope, My friend’s hemophilia story
I met him as a program assistant for VMMC — Voluntary Medical Male Circumcision.
He was a child, and during that procedure our clinical team ran tests and found out he had hemophilia. From that day, I followed his journey.
I checked in on his healing, stayed in touch, and kept monitoring his recovery. Over time, the distance between program staff and patient faded. He became a friend.
For years after, his world felt small.
He would say, ‘What if I’m in an accident and I can’t stop bleeding?’
Fear kept him from traveling. He called himself ‘fragile,’ like he had to live in bubble wrap.
His mother worried every time he stepped outside.
Even a bruise felt like an emergency.
Hemophilia A and B mean the body doesn’t make enough clotting protein, factor VIII or factor IX, so bleeding lasts longer.
For decades that meant regular infusions and a life built around risk.
But now, something is shifting.
Gene therapy is here, a one time treatment that gives the liver a working copy of the missing gene.
The liver then makes the clotting protein on its own. Studies show it can last 5 and more years after one dose.
One therapy for hemophilia A is approved in Europe, and one for hemophilia B is under review.
Doctors still watch the liver in the first year, but the goal is bigger, fewer infusions, fewer emergencies, less fear.
When I told him about this, I saw hope again. Not a guarantee of zero risk, but a chance to stop living like glass. A chance to travel. A chance for his parents to breathe easier.
He started as a child I was supporting through VMMC.
He became a friend I’m rooting for.
From ‘I have to be careful’ to ‘Maybe I can live again.’
If you or someone you love has hemophilia, talk to a hematologist about gene therapy.”
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