Disease halts woman's life
A RARE and debilitating disease called scleroderma has turned the life of 25-year-old Mapula Ditshwane into a hell because she is unable to sit or bend and cannot perform most daily chores and activities.
The woman from Klipgat, north of Pretoria, is only able to stand or lie down and needs help to go to bed.
Scleroderma is a connective tissue disease that results in tight skin and joints and negatively affects blood vessels, muscles and internal organs.
General practitioner Dr John Mampane said Ditshwane's disease had stunted her growth.
Mampane described scleroderma as an autoimmune disorder that results in the immune system attacking and destroying healthy body tissues.
The symptoms include hair loss, hardness and thickening of the skin, stiffness and tightness of digits and limbs.
The cause of the disease is unknown.
The doctor has recommended that Ditshwane undergo treatment to determine whether the condition is getting worse, and said she was fortunate in that the disease had not yet attacked her internal organs.
She shares a shack with her uncle, Ephraim Nxumalo, who said Ditshwane was born normal, but that her condition changed when she was seven.
Her parents are dead. She had lived with her grandmother until last year when her gran died.
Nxumalo said they had taken Ditshwane to many doctors and specialists, but her condition remained unchanged. The last time she went for treatment was 10 years ago.
Ditshwane looks undernourished and weighs only 22.8kg, which is the normal weight for children eight to 10 year old.
She has the appearance of an old woman due to her wafer-thin limbs and stiff joints.
Her severely limited movements mean that she can only stand or walk slowly. She tires easily and relies on others to carry her around.
Nxumalo said it is difficult to attend to her needs.
"I do my best to take care of her but it is difficult for me to bathe her and do her washing."
She said she relied on neighbours to help her relieve herself and she was humiliated when she had to go to the toilet because she used a plastic bucket and had to spread her legs wide over the bucket.
She accused some family members of neglecting her.
Nxumalo appealed to their relatives to help him to take care of Ditshwane.
Another of Ditshwane's uncles, Jonas Ditshwane, came to the family's defence and explained that most of them were at work during the day and there was no one else available to care for her.
He said the family held a meeting last month and decided it would be best to send her to a specialised care home, but Ditshwane is against the idea.
Ditshwane said it meant her family was deserting her.
"I do not want to go to a home. I want my family to give me love and care."
Her aunt Portia Ditshwane said she wished she could take care of her niece, but she works in Johannesburg and commutes daily.
"I would like to hire someone to take care of her, but her drinking habits discourage me," she said.
Ditshwane said she had resorted to alcohol to try and cope with the disease, adding that this was why she often drank her disability grant away.
"I do not like drinking so heavily, but this is how I get some comfort," she explained.
- This article was first published in the paper on 19 July