Group warns against isolating children with rare diseases
28 February 2025 |
12:23 am
A Group, Massive Awareness for Rare Diseases (MARD) Nigeria, yesterday, visited markets in the Igbona area of Osogbo, the capital of Osun State, to create awareness on rare diseases and advocate for those affected by the ailments.
A Group, Massive Awareness for Rare Diseases (MARD) Nigeria, yesterday, visited markets in the Igbona area of Osogbo, the capital of Osun State, to create awareness on rare diseases and advocate for those affected by the ailments.
The sensitisation and awareness drive was part of activities marking this year’s International Rare Disease Day which is marked on February 28 every year.
The team was led to the marketplace by one of the Osun State MARD Nigeria project coordinators, Funmilayo Abdullahi. Addressing traders, buyers, commercial motorcyclists, and other passersby, Abdullahi educated them about the challenges and needs faced by about 400 million individuals living with rare diseases in the world, noting that the community needs better diagnosis, treatments, and social support.
She told the market men and women that once they start noticing that any of their children or wards are falling repeatedly while walking, they should take their affected child to a teaching hospital for a proper diagnosis to confirm whether it is not a case of muscular dystrophy, which is one of the rare diseases.
Abdullahi asked them to desist from linking rare diseases to spiritual attacks, rather, parents and family members should show love and care to those affected and join in the campaign for increased empathy, promotion of research funding, and drive legislation for policy changes aimed at improving the lives of millions living with rare diseases so that they can live well and fulfil their dreams.
Aside from muscular dystrophy, other examples of rare diseases include Hemophilia, an inherited blood disorder that causes excessive bleeding and bruising; Phenylketonuria, an inherited disorder that causes a buildup of phenylalanine in the body; Cystic fibrosis, a genetic disease that causes thick mucus to build up in the lungs and pancreas, among others.
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