Challenge diagnosing rare diseases in Namibia

Namibian Alliance for Rare Diseases head Bianca Özcan says a prominent challenge that rare disease patients face is that of misdiagnosis and Namibia does not have the proper equipment to provide accurate diagnoses for these patients.

She said this in an interview with The Namibian on yesterday, on the eve of World Rare Disease Day. “There can still be that loophole of misdiagnosis. We do not have all the facilities in Namibia to do proper diagnosis, for example genetic testing,” Özcan said. She added that another issue is that citizens are not educated enough and do not have patient advocates. According to Özcan, there are no links from patients to doctors.

Özcan said together with the SADC Rare Disease organisation, they have proposed a policy recommendation that will be tabled for discussion with the health ministry.

“I have to discuss it with them to see how they will incorporate rare diseases into their overall policies. Our main aim right now is to see if intermediate hospitals can make a room available for rare disease patients,” she said. Özcan has encouraged every stakeholder from patients, hospitals and communities to unite in raising awareness for the day. She said contributions from all stakeholders are important because they create a space of equality and equity when it comes to issues such as wheelchair ramps.

“I think we can start with parents educating their kids to not laugh at their peers with disabilities as this lowers the self esteem and dignity of the patients,” Özcan said.

The last day of February sees the commemoration of World Rare Disease Day in which the Namibian Alliance for Rare Diseases, formed in 2019, will have a special programme to bring to the fore the idea of raising more awareness and advocacy about rare diseases in Namibia to address the challenges faced by those living with rare diseases in Namibia.

“As we observe [World] Rare Disease Day, we stand united in raising awareness, providing support, and driving positive change for individuals and families affected by rare diseases in southern Africa,” Özcan said.
According to Özcan, they will light up the hospital in the colours of World Rare Disease Day.