Mpumalanga twins Lwandile and Lwanele Mkhonza (16) were born with a rare genetic skin disorder, Xeroderma pigmentosum (XP), that makes them photosensitive or highly sensitive to sunlight. Lwandile and Lwanele can only walk outside in the afternoon, night or when it’s raining to avoid the sun.
When exposed to the sun the Mkhonza twins suffer severe burns regardless of how long they’re in the sun for. The boys’ skins become extremely dark, and crack from the heat. To be out in the sun they need to wear UV protective suits.
The twins’ mother Phumzile Mkhonza (43) has not been able to work since her children were diagnosed in 2009. The twins’ father died the same year and she has been taking care of them by herself.
“My twins’ skins started to change when they were two years old. We consulted many hospitals until they were diagnosed at Steve Biko Hospital in Pretoria. They are currently being treated there,” says Phumzile.
In addition to sensitivity, having XP increases risks of other serious diseases and resulting disabilities. In 2017 the twins were part of a study conducted by the University of Pretoria and it was found that Lwandile and Lwanele and other children like them are at a high risk of skin cancer by the time they turn 10. They are also vulnerable to other forms of cancer.
Lwanele has undergone dozens of operations. He lost both eyes to cancer, he’s living with one side of the nose, and his lips have been eaten by cancers. He’s had more than 10 procedures done to his head and tongue. He can no longer speak properly as a result. Lwandile has lost his left eye – also due to cancer. Currently he has a tumour in the right eye, the family is waiting for the results of an MRI scan. He also has had numerous operations on the head as well as his tongue.
Having children diagnosed with XP has left Phumzile with little to no social life. Her daily routine revolves around protecting the twins against the harshness of the sun. This includes helping them bathe with specific soaps and the immediate application of a sunscreen with SPF 50 or higher. The sunscreen needs to be applied every two hours. And because the boys are frail, they need help with everything they do.
“This has affected me mentally because I have little support structure. I am unable to work because I need to take care of my children. I am the only one that understands their condition, ” says the mother.
Lwandile and Lwanele don’t have any formal education. They last attended Grade R and that was the end of their school journey.
Phumzile said that it’s not only the sun that affects them, even bright light bulbs can cause irritation to their skin. The family uses low watts bulbs that are dim and pose no harm to the twins.
“Their skin itches and gets very painful and irritable and this is even with all the creams and protection applied to them. No inch of their skin must be exposed at all,” she says.
Currently the family of three lives in a one room shack divided with a curtain cloth to make separate rooms. This also contributes to the twins’ conditions because a house made of corrugated iron can get extremely hot – especially during the summer months.
They rely on the care dependency grant from the government to help them get by. They don’t have a car of their own to help transport them to different doctors’ appointments. And the soaps and creams they need cost the mother thousands of rands every month.
The XP Society started in 2010. The non-governmental organisation’s role is to raise awareness about the condition. They also help families to get protective clothing. And every year the organisation hosts an XP camp once a year where they all get together and kids can have fun.
The organisation is founded by Maryna de Beer. Having lost two siblings to XP and being diagnosed with the condition herself, De Beer started the support group to create awareness and make those with XP feel like they belong.
“We also have the kid’s eyes tested every two years, and have glasses made for them,” she adds.
The NPO depends solely on donations to operate. The help they can extend relies on the donations they get.
“This year is a milestone for us because we helped a patient get her operation at a private hospital. Sometimes it takes very long to get help from the state. XP is very rare so most of our patients are misdiagnosed and then it’s too late,” says De Beer. – Health-e News