Policy needed for unusual illnesses
leg to curl up. This means that the wide-eyed toddler is unable to walk and has to crawl on her knees to move around.
“At times I break down looking at her when she tries to keep up with other children. It’s difficult,” Moropa said.
Moropa said they had managed to raise some funds through donations, but the journey was not easy. “All we are asking is for people to open up their hearts so we can save our daughter’s leg. We want the best for her.”
Mahlatse Mothiba, a second-year student at the University of Johannesburg, who suffers from lupus has to take about 20 tablets daily.
Mothiba, who was diagnosed with lupus in 2015, said: “Pain is an everyday thing. I’m like an old person without the memories of my childhood. I can’t do half the things that my peers can do.” Experts have warned that SA will struggle to tackle rare diseases without a specific policy that addresses these issues.
This was mentioned during a round-table discussion hosted by patient advocacy group Rare Diseases South Africa (RDSA) in partnership with pharmaceutical company Sanofi.
Dr Helen Malherbe, from the University of KwaZulu-Natal, said SA needed to urgently address the issue of rare diseases and congenital birth defects in order to tackle child mortality.
Malherbe added there was no legislation to regulate rare diseases and this contributed towards poor diagnoses and lack of treatment. She said there was also a lack of a reliable database, which makes it hard to track prevalence.
RDSA founder Kelly du Plessis said developing a policy would help protect the rights of patients and ensure they have access to treatment.
Assistant director for birth defects data collection at the Department of Health, Vuyiswa Lebese, said they were busy working on a database for rare diseases. – Zoë Mahopo