How is Aarskog syndrome treated?
Last updated September 6, 2026.
**There is no cure for Aarskog syndrome, so treatment corrects the specific problems it causes and supports growth, vision, teeth, and learning.** What you need depends on which features are present, and they vary widely even within one family. Most children do best with a small care team that includes pediatrics, genetics, eye care, dentistry, and orthopedics. Growth is usually slow in early childhood, and many children reach a near average adult height after a later puberty. Keep a written list of your child's findings and share it before any operation, because instability in the upper neck changes how anesthesia is handled. Ask about genetic counseling, since the condition is usually carried on the X chromosome and affects boys more severely.
What to do
- Confirm the diagnosis: Ask a geneticist about FGD1 testing, since the features overlap with other growth and facial difference conditions.
- Flag the neck before surgery: Tell the surgeon and anesthesiologist about the diagnosis so they can check the upper spine before any procedure.
- Book eye and dental checks: Schedule a full eye exam and a dental visit early, because vision and tooth problems are common and treatable.
- Track growth on a chart: Bring height and weight measurements to every visit so slow growth is spotted and evaluated rather than assumed.
- Ask about school support: Request an evaluation if you see delays in speech, reading, or attention, and use an individualized education plan.
- Get genetic counseling: Discuss inheritance with a counselor before planning another pregnancy, since the change is usually X linked.