Understanding Down Syndrome in Africa: A Guide for Families, Caregivers, and Communities

Isma Butt, DPT, DLHA Volunteer and Freelance Medical Writer. Medically reviewed by: A. Odutola, MB.BS, PhD.

A close up photo of a grown up man with Down syndrome in an African village. Credit. Freepik

 

Highlights

• The prevalence of Down syndrome during birth in African countries ranges considerably from 1 in 865 in Nigeria, 1.3-1.5 per 1,000 in South Africa, and approximately 1 in 555 in Egypt.

• Underreporting and poor prenatal diagnosis are other factors contributing to lower reported rates in rural and low-resource countries such as Sudan.

• Advanced maternal age has been identified as a high-risk factor, but Down syndrome is prevalent in all maternal age groups in Africa.

• Better access to quality healthcare, early diagnosis, treatment and inclusive education will help improve the lives of people with Down syndrome in Africa, reducing mortality and improving their quality of life.

 

Introduction

Down syndrome is a condition that affects numerous families worldwide, including in Africa. Every year, children are born with this genetic disorder, which affects their developmental physical growth, learning, and well-being. However, despite that, early care and adequate support, as well as inclusion in the community, are key to their lives. 

This article aims to give fact-based and clear information to African families, caregivers, educators and health workers on Down syndrome, how common it is in some African countries and some challenges that exist in its diagnosis and management. It also informs on how the community can assist and support children with the condition.

 

What is Down syndrome?

Let's begin with stating the obvious facts. Down syndrome is not an illness or a curse but a defective genetic condition. It happens when the child is born with an extra chromosome.

Think of the chromosomes as little, instruction manuals within each cell of your body. These manuals instruct your body how to grow and how to function.

Humans typically possess 46 chromosomes that are arranged in pairs of 23. Babies with Down syndrome possess one extra copy of chromosome 21 to make 47 chromosomes.

Each child with Down syndrome is different and has a combination of abilities and needs. Some require additional assistance in learning new skills and others can live quite independently.

 

How common is Down syndrome across African countries? 

The prevalence of Down syndrome also differs by country and region, frequently because of variation in reporting and accessibility to healthcare.

• In Nigeria, 1 birth in every 865 is likely to have Down syndrome.
• In South Africa, research indicates that there are approximately 1.3 to 1.5 cases per 1,000 live deliveries, with few differences in various races.
• In Egypt, the rates are nearer to 1 in 555 live births.
• Sudan has slightly lower reported rates, at around 1 in 18,000, probably because of under-reporting.

Most of the data are outdated as they are from studies reported in the late 1980's, and 1990's. More recent data from African countries are needed.  

Overall, many cases in sub-Saharan Africa may remain unreported because of a lack of prenatal testing and post-delivery registration especially in rural areas.

 

What causes Down syndrome?

Fig. 1: Image showing the genetic basis of the types of Down syndrome. Click on image to enlarge. Credit.

 

Down syndrome is a result of a natural cell division error. There are three types of Down syndrome (See fig. 1).

• Trisomy 21: The most common form; in which each cell has an additional chromosome 21. About 95% of individuals are diagnosed with this type.
• Mosaicism: Approximately 2% of people have this type of Down syndrome. Some cells do, others do not, have the extra chromosome. This may result in milder symptoms. 
• Translocation: 3% of people have this type. A fragment of chromosome 21 is attached to another chromosome. It may sometimes run in families but usually happens by chance.

Age plays a role: Mothers who are above the age of 35 have a high probability of giving birth to a child with Down syndrome. However, children with Down syndrome can be born to mothers of any age.

This additional genetic material alters the way the baby develops both physically and mentally. 

 

What doesn’t cause Down syndrome?

It's also important to know what isn't linked to Down syndrome:

• It is not the result of something the mother ate or did during pregnancy.
• It is not punishment by ancestors or gods.
• It is not contagious, like a cold.
• It's not the parents’ fault.

Understanding this helps reduce stigma in the communities.

 

What are the signs and symptoms of Down syndrome?

Fig. 2: Common Signs and Symptoms of Down syndrome. Click on image to enlarge. 

 

Children with Down syndrome have some common characteristics which include (See fig. 2):

Physical Features:

• Small head
• Flattened face, especially the bridge of the nose
• Short stature
• Almond-shaped eyes with an upward slant
• Short neck 
• Short hands with a single palmar crease
• Poor muscle tone ( Floppy babies), loose joints
• Small hands, ears, and feet

Development and Learning:

• Delayed speech and motor skills
• Learning difficulties that could be mild to moderate 
• Problem-solving and memory issues

Health concerns:

• Heart defects present at birth
• Hearing and vision problems
• Thyroid dysfunction
• Sleep disorders and other medical issues

Early treatments and therapies are important in providing a child with Down syndrome with a good quality of life.

 

How to diagnose Down syndrome

Before Birth:

• The prenatal options available include ultrasound scans (at 14 and 24 weeks of gestation) and maternal blood tests.
• More specific diagnostic procedures, like amniocentesis and chorionic villus sampling confirm a case by testing the chromosomes of the fetus.
• These tests can indicate and/or confirm the possibility of Down syndrome depending on the specific one conducted..

In Africa, Down syndrome prenatal screening is not widespread yet, but it is expanding in many areas. 

At Birth:

• Doctors can easily recognise Down syndrome babies by physical examination.
• These cases are mostly diagnosed after birth when their physical characteristics are noticed.
• Genetic testing is used to confirm a diagnosis.

Why It Is Important to Diagnose Early?

• It enables families to start treatment earlier.
• Early intervention enhances the development of a child and their education.

 

Barriers to prenatal diagnosis and birth records in rural Africa

Some of the challenges restricting early diagnosis and accurate birth data are:

• Limited healthcare facilities offering prenatal screening, or testing services.
• A shortage of professional healthcare workers.
• Weak data and records management systems.
• Fears, misconceptions or beliefs about testing and/or disability.
• High costs and transportation issues.
• Families are unaware of the benefits provided by prenatal care.

These factors reduce early diagnosis and delay interventions that result in better outcomes.

 

Solutions and strategies to overcome barriers

Early detection and proper birth records are vital in giving proper support and care to a child with Down syndrome. But sub-Saharan Africa has its own challenges in these directions. Strategies to overcome these barriers are listed below:

• Make antenatal care screening available in rural areas, particularly high-risk groups.
• Provide parents with up-to-date written information about Down syndrome and connect them to peer support.
• Establish and support the Down syndrome association to raise awareness.
• Promote the development of multi-disciplinary Down syndrome clinics to enhance the coordinated medical care across disciplines, including cardiology, respiratory, endocrine, and Ophthalmology.
• Conduct additional epidemiological research in the sub-Saharan part of Africa to raise awareness among health workers and policymakers.
• Follow and adopt international care guidelines but adjust these to the available local resources and context.

 

Management of Down syndrome

Fig: 3: Image showing different therapy approaches for Down syndrome treatment. Click on image to enlarge.

 

Down syndrome has no cure, but health and development can be maintained in many ways (see fig. 3):

• Regular Health Checkups: Managing heart, hearing, visual and thyroid issues through ongoing care.
• Therapies: Speech therapy improves communication. Occupational and physical therapy help with movement and skills.
• Education: Special needs assistance ensures that children can learn at school, and grow independently.
• Family and Community: Affection and acceptance in society make people happier and well-developed.

The best results are achieved with multidisciplinary care, i.e., care in which various health and education professionals collaborate.

Education 

Therapy and education at an early age give children a possible chance to learn and grow. Early intervention usually starts soon after birth and continues until age three. Early intervention includes:

• Speech and language therapy
• Occupational and physical therapy 
• Inclusive education with adaptations for each child's needs

Benefits of Early Intervention:

• Studies have shown that early intervention is key to helping a child with Down syndrome have better outcomes.
• It sets the ground for a lifetime of learning and independence.

After Age Three:

The responsibility for continued services typically shifts to the local school district, often through special education programs. These are available in private schools but not common in public schools across African countries.

Role of Families:

Families play a vital role by collaborating with therapists and educators to support their child’s progress.

 

Physiotherapy for Down syndrome 

Children with Down syndrome have lower muscle strength and experience difficulty in coordination and balance. Physical therapy includes exercises and activities that help:

• Increase muscle strength 
• Improves posture and balance 
• Develops efficient walking patterns 
• Improve gross and fine motor skills (crawling, sitting, walking, jumping, and running).

Long-term physiotherapy can help physical well-being and facilitate independence.

 

Support for Family and Community

Raising a child with Down syndrome can be a wonderful and tough experience. Caregivers should be given emotional support. Community organisations and support groups provide an environment to share experiences and guidance. Practical tips involve the creation of daily routines, developing independence, and knowing where and when to get assistance.

Health care professionals are very important in helping families answer medical and developmental questions. Empowering the family enhances the quality of care and overall resilience.

Communities also play a significant role in promoting acceptance. Increasing awareness and reducing stigma will help integrate children and adults with Down syndrome in schools, social and work places.

 

Inclusion and Acceptance

Inclusion means that children with Down syndrome are included to learn and play together with their peers.

In Africa, stigma and cultural myths lead to isolation but inclusive spaces help to break those barriers. Inclusive education promotes tolerance and respect among all students, which is beneficial to both the students with and without Down syndrome. This fosters acceptance in communities, enhancing lives, making friends and belonging.

Schools that are inclusive make room for children with Down syndrome in regular classrooms. This approach:

• Promotes friendships and social skills
• Encourages understanding and empathy among all children 
• Helps children with Down Syndrome reach their potential 

Educating teachers and conducting awareness programs will help eliminate the stigma and promote respect.

 

Conclusion: A Shared Responsibility 

Down syndrome is part of the history of many African families. Through awareness, intervention at an early age, support by the community and a non-judgmental attitude, children with Down syndrome can lead normal lives.

Whether you are a parent, a caregiver, an educator or a health care worker, do not hesitate to find resources and help. Be an ambassador of better services and awareness in your society. 

If you are pregnant and want to learn more about Down syndrome screening options, consult your gynaecologist and make sure to visit your nearest healthcare centre. 

You have the power to help in creating a future where every child with Down syndrome is given the care, respect and opportunity they deserve. 

Stay informed and engaged in advocating for children with Down syndrome!

 

Sources:

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7. McGlinchey E, Tewolde S, He A, et al. Down syndrome in Africa: Challenges, opportunities, and future directions. Alzheimers Dement. 2025;21(6):e70388. doi:10.1002/alz. 70388. Available from here 

 

 

Published: September 2, 2025
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