Rare Disease: FG Tasked on Int’l Collaboration, Increased Awareness

 Omolabake Fasogbon

The Nigerian government has been advised to give special considerations to Nigerians living with rare disease as well as formulate policies that will drive equitable access to diagnosis, treatment and quality health care.

This is as Nigeria has continued to be a victim of late and misdiagnosis of rare diseases,including poor treatment that have increased the number of casualties in recent times.

Rare diseases, also known as orphan diseases are described as a group of medical conditions that affect a small portion of the population.

According to experts, the  condition can be of genetic, autoimmune, infectious, or even degenerative aetiology and poses a vast array of medical challenges.

Speaking on the state of the disease in Nigeria recently, a General Practitioner, Dr. Victor Fayomi said  Nigeria had recorded many preventable deaths, including extreme cases which may not have been unconnected to poor awareness and financial limitations of those affected.

Findings show that there are over 7000  rare diseases, some of which include:Huntington’s Disease ,Cystic Fibrosis, Progeria, Niemann-Pick Disease, Ehlers-Danlos Syndrome and Wolman Disease, amongst others.

While these diseases are rare, about 350 million of global population have the disease, while less than five in 10,000 of Nigeria’s over 200 million population are reported to be affected.

Noting that management of the disease was quite painstaking, Fayomi said lingering brain drain in the Nigerian healthcare system had made caring for it a mirage, thus compounding the conditions in the country.

He again  decried poor attention and low level of political  involvement at providing the enabling environment and goodwill that could have improved scientific interventions and discoveries.

 Fayomi said it was high time that Nigeria’s leader  explored international collaborations to deal with some of the challenges.

 “At this juncture, government at all levels must rise up to the occasion. They must intensify awareness level on the disease to enable people take quick preventive and remedial actions as some of these diseases can be prevented by taking needful precautions.

“More importantly, they must seek international collaborations, prioritise research and learn from successes of other countries”, he said.