TMDCN WEBINAR – Early Diagnosis and Intervention of Muscular Dystrophy

The muscular dystrophy campaign Nigeria held a webinar on 7^th December 2024 to mark the Internation Day of Persons with Disabilities (IDPWD). The theme of the webinar is Early Diagnosis and Intervention of Muscular Dystrophy

Ofonmbuk Ibanga, PhD (Moderator) opened the session by underscoring the significance of the International Day for Persons with Disabilities (IDPWD), observed on December 3rd, and the need to raise awareness about the rights of individuals with disabilities, especially in developing countries like Nigeria. He introduced the theme for the United Nations IPDWD and provided context on the Muscular Dystrophy Campaign Nigeria, founded by Obianuju Amamgbo, which aims to promote awareness, inclusion, practical support, advocacy service and career guidance for those affected by muscular dystrophy.

Obianuju Amamgbo (Host) welcomed the speakers and participants were welcomed by the host, Obianuju Amamgbo, who gave brief overview of the charity’s objectives, achievements and planned projects/focus for 2025 which includes fundraising activities for procurement of disabled equipment like motorised wheelchairs for affected patients with difficulty in using manual wheelchairs.

The first speaker Dr. Ogechi Sylvia Eze (nee Odocha), MBBS MRCGP, who is a UK based General Practitioner and Public Governor at Derby City West, Derbyshire NHS Trust discussed Early Diagnosis and Medical Intervention for Muscular Dystrophy.

Dr Oge expressed appreciation for Obianuju’s leadership in raising awareness about muscular dystrophy in Nigeria, noting the lack of local data on the condition. She emphasized the necessity for Nigerian teaching hospitals to collect and maintain accurate records to better understand and address the needs of individuals with muscular dystrophy. She elaborated on the genetic nature of muscular dystrophy, stressing the importance of family history in understanding inherited conditions and the cultural differences in family perceptions between Nigeria and the UK.

In her discussion, she talked about the critical role of prenatal counselling for women considering pregnancy, particularly regarding family histories of conditions like muscular dystrophy. She highlighted the importance of early detection of developmental issues in children, such as difficulty walking and changes in muscle appearance. Furthermore, she emphasized the need for thorough health assessments, including detailed histories from parents, and the involvement of school nurses and teachers in identifying potential health issues.

Dr. Oge concluded by discussing the importance of physiotherapy and regular health check-ups for patients with muscular dystrophy, including lung function assessments and vaccinations.

The second speaker Ike Ezeike (PT) who is Specialist Paediatrics Physiotherapist and HOD Physiotherapy Department, FMC Makurdi, Benue state, discussed Muscular Dystrophy care at home and community. In his presentation, he discussed the etiology of MD, pathophysiology, clinical presentations such as progressive weakness, delayed motor milestones and waddling gait. He also discussed daily challenges of people living with Muscular Dystrophy including reduced mobility due to contractures, difficulties in breathing, problems with swallowing and digestion, facial stiffness and visual impairment, sleeping and other night time issues like positioning, cardiovascular complications, scoliosis and improper posture, psychological and intellectual problems.

Ike Ezeike also highlighted the community-related challenges of individuals living with muscular dystrophy such as social isolation and stigma, inaccessible public spaces and transportation, employment and education barriers, healthcare access and coordination, recreational and leisure activity participation.

Furthermore, he discussed the types of care available for MD to address the challenges identified including structural modifications and equipment for better accessibility, observation of proper diet, engagement in support groups, physical and respiratory therapies.

On the individual and collective responsibility for caring for someone with muscular dystrophy, Ike suggested that knowledge of MD can give a sense of control over what can be an unpredictable and challenging experience to a family member, friend or caregiver. Additionally, making practical changes to help make life easier, and support from loved ones in getting around at home, financial support, and advocacy can go a long way to help.

The webinar had about 30 participants made up of people affected by muscular dystrophy and their families and friends, and members of the general public from different works of life within and outside Nigeria.

Some of the questions asked and addressed at the event include how healthcare professionals can improve the early diagnosis of muscular dystrophy, how family history influences the likelihood of muscular dystrophy in children, and what the common symptoms of muscular dystrophy that parents should look out for to mention a few.

In her closing remarks, Obianuju on behalf of TMDCN, encouraged the members of the public to financially support the charity to enable them make adequate provisions for MD warriors such as mobility equipment, reasonable adjustment at home, and help with school fees, to mention a few.