By Caroline Katana
Lack of awareness of rare diseases and poverty are to be blamed for the increasing cases of suffering of many Kenyans, the Rare Diseases Council of Kenya CEO Christine Mutena has said.
Mutena said despite five per cent of the diseases having treatment only a few get the required medication on time.
She said 70 per cent of genetic diseases start in childhood but 30 per cent of children don’t make it to five years.
Mutena said the diseases overwhelm the victims because of the delayed diagnosis and difficulties in accessing treatment.
The CEO said although the rare diseases affect a small percentage of the population they are often serious, chronic and progressive.
She said it results in heavy social and financial burdens on the family since treatment is expensive.
“The prevalence of rare diseases is low but they pose a huge public health burden to the affected people and the country,” she said.
She added that the victims are often socio-economically and culturally affected because of stigma and isolation by the rest of the community members.
Mutena said that families living with rare illnesses face extraordinary challenges including scarcity of medical knowledge and delayed diagnosis as well as misdiagnosis.
There are over 6,000 rare diseases globally, some include childhood cancers and spinal muscular atrophy among others.
According to WHO it is estimated that 300 million people globally are living with rare diseases, six times the Kenyan population.
Some of the diseases are genetically related while others are a result of bacterial and viral infections.
However, Kenya is among the nations in the globe engaging policymakers in advocating for the inclusion of rare genetic and inherited diseases as part of the non-communicable disease government-led agenda.