February is Turner Syndrome Awareness Month

Turner Syndrome Awareness: Understanding a Rare Condition

February is Turner Syndrome Awareness Month, a time dedicated to raising awareness and understanding of this rare condition that affects people assigned female at birth. Turner Syndrome occurs when one of the X chromosomes is missing or partially missing, leading to a variety of developmental, medical, and social differences. Awareness and education during this month help families, friends, and allies better support those living with Turner Syndrome.

How Common Is Turner Syndrome

Turner syndrome is classified as a rare condition; about 1 in 2000 to 1 in 4000 live female births globally result in a child with Turner syndrome. Considering all pregnancies with this condition, the majority do not survive to birth. Approximately 98-99% of pregnancies end in miscarriage, usually in the first trimester. Only about 1-3% of conceptions with this condition result in a live birth. The loss or alteration of the X chromosome occurs randomly, making each child with Turner syndrome and rare and resilient survivor.

Signs and Symptoms

Turner syndrome can present in various ways, and symptoms may vary from person to person.

Common signs include:

Short stature or slowed growth

Delayed puberty or hormonal differences affecting breast development and menstrual cycles

Heart and kidney abnormalities

Skeletal differences, such as broad chest, low-set ears, or short fingers

Hearing and vision challenges

Learning differences, especially in math, memory, and spatial reasoning

Fertility challenges, though some people have successfully used fertility treatments

Diagnosis may occur prenatally via blood testing or ultrasound, or after birth/adolescence via a karyotype blood test. Pediatric endocrinologists and other specialists are often involved to ensure comprehensive care for growth, development, and overall health.

Treatment and Care

While there is no cure for Turner syndrome, treatments can help manage symptoms and support development:

Growth hormone therapy to maximize height during childhood and adolescence

Estrogen therapy to initiate puberty at the typical age, often continuing throughout life. Specialty care for heart, hearing, skeletal, gynecological, or other medical needs may be required or recommended by the patients' care team.

Supportive care is highly individualized — no two treatment plans are the same.

Being a Supportive Ally

Awareness is key, but allyship matters too. Turner syndrome affects each person differently, and understanding that is an important first step. For practical tips on how to show support, download the free February Ally Guide to learn five easy ways to be a thoughtful and informed ally.

Awareness Symbol

The purple ribbon with a butterfly is the recognized symbol for Turner Syndrome Awareness. The butterfly represents growth, transformation, and resilience — reflecting the strength of those living with Turner syndrome.

Resources

Turner Syndrome Society of Canada — https://www.tsscanada.org

Turner Syndrome Foundation (U.S.) — https://www.turnersyndromefoundation.org

Johns Hopkins Medicine — Turner Syndrome — https://www.hopkinsmedicine.org/health/conditions-and-diseases/turner-syndrome

Mayo Clinic — Turner Syndrome — https://www.mayoclinic.org/diseases-conditions/turner-syndrome