Ms Odesanmi said the condition affected the whole of her body.
She said: “I get asked, often, to describe the pain and I can’t.
“I’ve had two hips replaced, one ankle fused, my elbow is getting weakened, my shoulder is being affected and I have a disc bulge in my lower back.”
She has also had a liver transplant.
But Ms Odesanmi is hopefully the prospect of the lab-grown blood may mean fewer transfusions in the future.
“Hope is one thing we’ll hold on to, hope is all we have,” she said.