POBIC and Down Syndrome Foundation Nigeria embark on a new collaboration
The Italian foundation POBIC met with the Down Syndrome Foundation Nigeria to launch a cooperation project dedicated to people with Down syndrome.
The Italian foundation POBIC recently met with representatives from the Down Syndrome Foundation Nigeria at the Nigerian organization's headquarters in Lagos. The meeting marks the beginning of a new international collaboration in the field of support for people with Down syndrome.
The situation of Down syndrome in Nigeria
According to epidemiological studies, in In Nigeria, there is an incidence of 1 case of Down syndrome per 865 live births. This data comes from research conducted over 9 years in Nigerian hospital facilities. Cytogenetic analysis of 386 patients showed that 95.5% of the cases were due to regular trisomy 21.
However, experts point out that the actual data could be higher. Most births in Nigeria take place in non-conventional settings such as churches and traditional facilities. who do not keep records. Furthermore, many cases go unreported for statistical purposes due to traditional beliefs that associate congenital abnormalities with superstitions.
The challenges of the healthcare and social system
Mrs. Rose Mordi, President of the Down Syndrome Foundation Nigeria, has identified two main problems: stigma and non-inclusion in the country's healthcare support system. According to public interviews, many parents hide their children with Down syndrome due to shame or fear of discrimination.
The Nigerian healthcare system has significant limitations in assisting people with Down syndrome. Many children are born with congenital heart defects requiring corrective surgery. It was stated that sending a patient abroad for heart surgery can cost over 10 million naira, a sum unaffordable for most Nigerian families.
The challenges that limit early diagnosis and accurate data collection include:
- Limited healthcare facilities offering prenatal screening services
- Shortage of professional healthcare workers
- Weak data management and record-keeping systems
- Fears, misconceptions, or beliefs about testing and disability
- High costs and transportation problems
Limited access to education and services
People with Down syndrome in Nigeria face challenges in accessing inclusive education. The Down Syndrome Foundation Nigeria runs a residential support center where it provides specialized education to children. According to Mrs. Rose Mordi, integration into regular schools remains problematic due to persistent stigma.
The organization highlighted that stigmatization manifests through cultural prejudices, social exclusion, and in some cases, religious discrimination. In some rural Nigerian communities, intellectual disabilities are still perceived as misfortunes or divine punishments.
The regulatory framework
According to the Down Syndrome Foundation Nigeria, People with Down syndrome in Nigeria are generally not recognized as people in the eyes of the law, which means their legal capacity can be removed simply because they have Down syndrome.
Although laws nominally prohibiting discrimination against people with disabilities exist, their enforcement remains weak or poorly perceived.
The Role of the Down Syndrome Foundation Nigeria
The Down Syndrome Foundation Nigeria was founded in 2001. as a non-governmental, apolitical, and non-profit entity. The organization operates through affiliations with Down Syndrome International, Inclusion International, African Down Syndrome Network, and Africa Disability Forum.
The foundation provides support to people with Down syndrome and intellectual disabilities, creating a community that includes parents, guardians, caregivers, and other stakeholders. Services include educational programs, therapies, and public awareness activities to reduce stigma.
In recent years, the organization has partnered with entities like the Lagos State Health Management Agency (LASHMA) to expand access to healthcare, and with Cummins West Africa Ltd. for projects to empower people with disabilities.
POBIC's Experience in Africa
POBIC Foundation is an Italian NGO with many years of experience in healthcare projects in Africa. The foundation has carried out missions in Nigeria, Uganda, and Ghana, focusing mainly on cardiac surgery interventions through the “Open Heart” projects.
POBIC's activities in Nigeria date back to at least 2015, when the organization conducted training for doctors at the Federal Medical Center in Yenagoa on cardiopulmonary resuscitation. In the past, POBIC has facilitated surgeries for Nigerian children at Italian hospitals such as Gaslini in Genoa.
The new collaboration
The meeting between POBIC and the Down Syndrome Foundation Nigeria represents the beginning of a cooperation project that should integrate POBIC's medical expertise and international networks with the local experience and knowledge of the Nigerian context of the Down Syndrome Foundation.
The operational details of the collaboration are being defined, but the stated goal is to improve access to specialized medical care for people with Down syndrome in Nigeria, with a particular focus on congenital heart conditions that frequently affect this population.
Future prospects
According to experts, life expectancy for people with Down syndrome in Africa is beginning to increase thanks to improvements in healthcare access. This makes the need to develop adequate and sustainable support systems increasingly urgent.
The priority areas for intervention identified include:
- Improving access to quality healthcare
- Early diagnosis and treatment
- Inclusive education
- Outreach programs for healthcare professionals, educators, and the general public
- Strengthening protection and inclusion policies
The collaboration between POBIC and the Down Syndrome Foundation Nigeria is part of this context, with the goal of contributing to the development of a more accessible and inclusive care model for people with Down syndrome in Nigeria.
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