In a way, Roselyn Kanja’s family is lucky compared to other Kenyan families affected by rare diseases.
Roselyn lives in Nairobi, one of the largest cities in Africa. There, she has access to good doctors, who diagnosed her son Morgan with Joubert Syndrome in January 2017, when he was four months old.
She knows, however, that families in rural parts of Kenya sometimes have a hard time just getting to a hospital, let alone finding a specialist able to diagnose a rare disease like Joubert Syndrome. And there’s no telling how many Kenyans with rare diseases have been shunned by families who believe in curses and witchcraft. Or how many are just praying for a miracle instead of seeking treatment.
But they’re out there, Roselyn says.
“Most of them are suffering in silence,” she said.
Roselyn aims to change that.
She and a few other women are in the process of forming Rare Disease Kenya, an organization that aims to unite the east African country’s rare disease community and push for changes that could help them.
They took the first step toward achieving those goals by hosting an event to recognize Rare Disease Day – one of more than 470 events held around the world to raise awareness about rare diseases.
The day-long event in Kenya attracted more than 100 people to Gertrude’s Children’s Hospital on Saturday, Feb. 24 (technically, the Kenya event took place four days before international Rare Disease Day, which takes place each year on the last day of February). After painting their hands to recognize the worldwide event, the crowd heard from doctors and other experts who discussed, among other things, the importance of early intervention, patients’ rights and how Kenyans with rare disease can deal with the stigma they sometimes face.
The event also helped generate awareness: It got coverage from local newspapers, TV stations and radio stations. It also helped Roselyn and fellow organizers Christine Mutena and Patricia Karani make some good contacts – with families, with doctors and even with Kenya’s former Cabinet Secretary for Health, Dr. Cleopa Mailu.
They met him about a month before the event, after getting his phone number from a doctor. He reminded them that most government officials, himself included, aren’t well informed on issues related to rare diseases, so families affected by them need to make their voices heard, Roselyn recalled.
She started lending her voice to the conversation shortly after her son Morgan got his diagnosis. She started by joining a WhatsApp chat group that included about 15 local people who either have a child with a rare disease or have a rare condition themselves.
Then, on the evening of Dec. 1, four of those women met up at Savanna Coffee Lounge in downtown Nairobi. That’s when the ball really started rolling.
“Someone suggested, ‘We have Rare Disease Day coming up. Why don’t we do something about it?’ … By the end of the meeting we were so excited and couldn’t wait to begin planning for it,” Roselyn said, adding that a smaller Rare Disease Day event had been organized in Kenya the previous year.
Through Rare Disease Kenya, Roselyn and her colleagues want to educate Kenyan families with rare diseases and connect them with each other.
But the organization also wants to educate doctors and people in government. If the group can gather together enough families, it will be able to show government agencies just how prevalent rare diseases are, when you look at them as one group. For instance, over the long term, the group wants to make sure that various rare diseases are covered by Kenya’s National Hospital Insurance Fund, known as NHIF, Roselyn said. They also eventually want to push for higher newborn screening standards – a topic that one of the doctors spoke about during the Rare Disease Day event. Roselyn noted that doctors in Kenya often will send babies home without a hearing exam, a blood test or a pulse oximetry test.
“People got a chance to actually ask, ‘Why is this not being done? What can we do?’” she said.