Osteogenesis Imperfecta (OI) Foundation Ghana, an NGO supporting persons living with OI, has called for the restructuring of the education and health systems to pay special attention to OI patients.
Madam Justina Yiadom Boakye, President and Founder of the foundation, said the state of the current systems put OI patients in a difficult situation, hence the need for favourable policies and structures for inclusivity.
The condition is a genetic bone disorder that is present at birth and results in the fragility of skeletons, particularly in childhood, and other growth abnormalities.
The severity of OI ranges from mild to lethal and could result in bone deformity, hearing loss, immobility and even death.
There is no known cure for the disease but it could be managed.
Madam Yiadom Boakye, observed, for instance, that the current system of examination where persons living with OI sat down for hours to write their papers was daunting and dangerous for their condition.
“OI kids have short and weak limbs, especially with their hands, and so if they are supposed to write two to three hours papers of exams, they can’t do it. Why not restructure our educational policies so that we can have more oral examinations for these kids?” she queried.
Madam Yiadom Boakye made the remarks at a stakeholder durbar organised in collaboration with the Cape Coast Teaching Hospital (CCTH) to mark this year’s Wishbone Day.
Wishbone Day is celebrated annually to create awareness and acceptance of Osteogenesis Imperfecta which is also known as Brittle Bones disease.
The theme for this year’s celebration was “1voice for OI”.
To cater for the health and general wellbeing of children living with the condition in Ghana, the Foundation and CCTH have set up a multi-speciality clinic known as the OI clinic which runs quarterly.
Specialists at the clinic include a paediatrician, orthopaedic senior resident surgeon, Ear, Nose and Throat specialist, eye specialist, dentist, radiologist, physiotherapist, occupational therapist, audiologist, dietician and clinical psychologist.
Madam Yiadom Boakye said there was the need to incorporate some of the medical expenses of OI patients into the National Health Insurance Scheme to ease the burden on parents and caregivers.
She said, as a specialised genetic condition, the care for such the disease was multidisciplinary and, therefore, financially draining.
“The kids also need therapy and recreational centres to exercise their bones to get strengthened but we don’t have them available,” she said.
She also observed that accessibility was another major challenge even though the Persons With Disability Act 2006 (Act 715) directed all public buildings to be disability friendly after 10 years.
“And so, we plead on the government to assist us to get to that point where a child with their wheelchair can move anywhere at any time and also have a feel of the society,” she added.
Touching on how to stop stigmatisation against persons living with OI, she said the only way was to create more awareness for people to appreciate the condition.
Dr Stephen Laryea, the Medical Director of CCTH, condemned the stigma against OI patients and noted that the condition was not infectious.
“We should not look down on them and as parents, let’s be careful of what we tell our children when they go to school. Let’s educate our children to accept these children and not ostracise them,” he said.
“Let us seek how best we can educate them to help these children reach their potential. You never know what they will become in future,” he added.
Mr Laryea further encouraged healthcare workers to give out their best in caring for children with the condition.
Mr Alexander Ofosu Yeboah of the Central Regional Office of Social Welfare indicated that OI patients fell under Persons with Disabilities and, therefore, urged parents of such children to visit the social welfare offices in their districts for the needed support.
He said the office would register them for psychosocial counselling and put them on the disability common fund as well as support them with income generating activities.
Dr Mawuli Agbale, a senior lecturer with the Biochemistry Department of the School of Biological Sciences, University of Cape Coast, called on pharmaceutical companies in Ghana to put in resources to produce medications for the condition.
On behalf of Prof Samuel Ato Duncan, the CEO of the COA Herbal Centre, Dr Agbale pledged GHC10,000 in support of the Foundation’s work.
A mother of a child living with OI, Madam Memuna Adam, who narrated her ordeal, expressed gratitude to the hospital and the Foundation for supporting her in diverse ways