How common is TS?

Globally, TS occurs in about 1 in 2,000 female live births. In Africa, the true number is unknown because many girls are never diagnosed or only identified much later in life.

This is why TSA is working to raise awareness among families, schools and clinicians, and to push for better data and inclusion of TS in national health information systems.

What causes Turner Syndrome?

TS is caused by a random change ("chromosomal variation") that affects the X chromosome. It usually happens by chance when the egg or sperm is formed, or shortly after conception.

Nothing a mother or father did during pregnancy causes TS, and parents of a child with TS are not to blame. In most cases, the chance of having another child with TS is low, but a genetic counsellor can explain this in more detail.

What are common signs of TS?

Common signs include short stature, slow growth, late or absent puberty, swelling of hands or feet at birth, a broad chest, or differences in the neck, ears or nails.

Not every girl has all of these, and some girls are only diagnosed in adulthood when they struggle with fertility or have heart or bone problems. If you notice several of these signs together, especially short stature, it is important to ask for a TS assessment.

How is Turner Syndrome diagnosed?

TS is confirmed with a karyotype test, a blood test that looks at the chromosomes. Sometimes other tests such as heart scans, hormone tests and hearing checks are also needed.

In many African countries, karyotyping is only available in a few cities or private laboratories. TSA works with clinicians and partners to make information, referrals and advocacy easier for families who suspect TS.

Is there treatment for TS?

There is no cure for TS, but there are effective treatments and supports:

• Growth hormone to support height when started early in childhood.
• Oestrogen and progesterone to support puberty and bone health.
• Regular heart, kidney, thyroid, hearing and bone checks.
• Learning support and psychological care when needed.

Access to these services is unequal across Africa. TSA advocates for better access and connects families with clinicians who understand TS.

How can schools support learners with TS?

Many girls with TS attend mainstream schools. Some may need support with mathematics, processing speed or social skills, while others may need flexibility for medical appointments and follow-up.

TSA develops simple guidance for teachers and school leaders and can join conversations with education officials to make sure TS is included in inclusive education plans.

Can women with TS have children?

Many women with TS experience reduced fertility or early ovarian insufficiency. Some may conceive with their own eggs, others may consider options such as donor eggs, surrogacy or adoption.

Because pregnancy can be high risk for the heart in TS, it is essential to work with a cardiologist and high-risk obstetric team. TSA encourages conversations that respect women's choices while keeping safety at the centre.

How can Turner Syndrome Africa support me?

TSA connects families, girls and women with TS, clinicians, teachers and policymakers across Africa. We offer:

• Peer support spaces and story sharing.
• Advocacy and awareness campaigns in 13+ African countries.
• Technical input to health and education policies and guidelines.
• Links to clinics, specialists and learning resources where possible.

Reach out to us via the contact form below or on X @AfricaTurner to find out how you can join the community, collaborate or support our work.