A group, Massive Awareness for Rear Diseases Nigeria, on Thursday, visited markets at Igbona area of Osogbo, capital of Osun State to create awareness on rare diseases and advocate for those affected by rare diseases.
The sensitisation and awareness drive was part of the activities marking this year’s International Rare Disease Day which is marked on February 28 every year.
The team was led to the market places 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 is falling down repeatedly while walking, they should take their affected child to a teaching hospital for proper diagnosis so as to confirm whether it is not a case of muscular dystrophy, which is one of the rare diseases.
Abdullahi asked them to desist from tying 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 fulfill their dreams.
Aside from muscular dystrophy, The Point reports that other examples of rare diseases include Hemophilia, an inherited blood disorder that causes excessive bleeding and bruising; Phenylketonuria, which is 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.
Speaking in an interview with The Point, the Founding Director, Foundation for Muscular Support Nigeria and Convener for MARD Nigeria, Oyindamola Adeniyi explained that there are about 7,000 rear diseases globally, saying her organisation has special focus on muscular dystrophy, which she described as a progressive disease that leads to disability.
Adeniyi warned against stigmatisation and reproach against those living with rare diseases, asking parents and guardians to stop locking rare disease warriors inside their houses or isolating them from the society.
She said, “The fact that some parents want to sperate their children who have muscular dystrophy and other rare diseases from the society is just a minute challenge that they face, they also need basic access to treatment, and unfortunately, there is no access to treatment, no access to therapy. When this disease progresses, there is this machine they connect to the lung to make them breath well. The pulmonologist will set the machine in a way that will help the patient with muscular dystrophy to breathe well.
“They (rare disease patients) face limited access to treatment, limited access to healthcare professionals that will help their course. On the part of the government, government should not only focus on communicable diseases. When you look at health centres out there, they only focus on communicable diseases, immunisations, which are good but the UN Sustainable Development Goal says no one should be left behind. That is why we are advocating for muscular dystrophy to be added as non-communicable disease. These are genetic diseases, that is why we are calling on parents to join us in advocating that governments and other well meaning Nigerians should make the treatment to be subsidised, make the drugs cheap, and diagnosis should be made available. They should even bring health professionals who are vast in this area in to come and help train our healthcare professionals.
“Muscular dystrophy can only be treated, it has no cure. They need physiotherapy and occupational therapy so that they can still find something to do so that the person can become economically responsible for the society. If they are provided with jobs, they can live longer and live fulfilling their dreams.”