Doctors baffled over patient's rare disease
DOCTORS at Charlotte Maxeke Hospital in Johannesburg are battling to determine how best to treat an Alexandra man who suffers from a rare genetic skin disorder.
Goodwill Ramothata, 21, has been readmitted to the hospital after he was admitted there earlier but sent home without any treatment or promise of an operation.
Ramothata suffers from Xeroderma pigmentosum, or XP. This is an autosomal recessive genetic disorder that compromises his system's ability to repair damage caused by ultraviolet light.
After Sowetan ran a story about his predicament last month, doctors at the hospital examined him on April 3 but could not help as any operation was deemed too risky. He was sent back home two days later.
Barney Selebano, chief executive officer of Charlotte Maxeke, said: "When we said there was nothing we could do for Goodwill we did not mean he should go home and die. We simply meant, clinically, there was nothing that could be done."
As a result of the condition, Ramothata's skin on his head is so corroded that his skull is exposed. He has been in and out of hospital all his life and constantly has to wear a towel around his head.
Earlier this year, doctors at the hospital told him to go home because they could not help him anymore.
Though doctors cannot treat his condition, he was readmitted on April 25 and it is unclear how long he will remain in hospital.
Dr Elias Ndobe, head of plastic surgery at the hospital, said his condition needed to be constantly monitored.
"I was surprised to learn about this case. I was not made aware of Goodwill. Maybe he was seen by a junior doctor who did not consult the seniors.
"His condition needs to be monitored as he is too weak to be sent home."
Ndobe said Ramothata needed to be at the hospital as he was prone to skin cancer.
Ramothata, who thought he would finally be cured, said: "I am tired of always going to the hospital to be operated on.
"For how long will I live this kind of life?"
His family hoped he would be operated on to remove a tumour on his right cheek, but Ndobe cautioned against major surgery until tests had been done. - firstname.lastname@example.org