Hundreds of employees of the Eastern Cape health department have been issued with final warnings aft.
Goodwill Ramothata of Alexandra in Johannesburg suffers from Xeroderma Pigmentosum.
The condition means that he is too sensitive to the sun and is forced to stay indoors.
He consistently wears a towel around the face and head to cover his wounds. The skin at the back of his head is so corroded it reveals his skull.
Ramothata, 21, was born with the disorder and lives with unbearable pain.
Holding back tears, he told Sowetan he hardly sleeps because of pain.
"My only wish is to one day enjoy a normal life like everybody else and wake up one day without feeling any pain," he said.
"I started getting treatment from Masakhane Clinic in Alexandra where they referred me to Chris Hani-Baragwanath Hospital. I was again referred to Charlotte Maxeke Hospital, where they did more than 10 operations on me."
As a result of the disease, Ramothata dropped out of Grade 9 in 2010. His unemployed father, Matome Ramothata, said he was worried that his son's condition was worsening.
He said: "When Goodwill was seven months old, he started developing spots that looked like freckle, we then took him to the Chris Hani-Baragwanath Hospital where a sample was taken and we were asked to return after two weeks."
The hospital informed the parents that there was something wrong with his cells.
"When he was seven years old he developed a growth on his upper lip and nose," the father said.
The hospital referred him to Charlotte Maxeke Hospital for his first operation.
Matome also said: "His upper lip was cut and later patched with a skin taken from his hands. Every year he was operated on, and the last operation was done in 2008.
"This year, we were sent back home because we were told that the operation we were hoping for will not happen as it will lead to brain damage in the long run," his mother, Josephine, said.
The family is unhappy with how the health system has been treating them.
Ramothata said he just wanted to have a normal life. "People in my community treat me differently, which makes me feel like I'm not human. I have a few friends who understand my situation and they are not judging me."
Spokesman for the Gauteng department of health and social development Simon Zwane said an investigation would be undertaken to establish if there were any compelling medical reasons that Ramothata could not be helped (at Charlotte Maxeke).
"Management at Charlotte Maxeke Johannesburg Academic Hospital will be asked to have a meeting with the patient's guardians to explain the treatment that the patient received and the reason for transferring him back to the clinic," he said.