Can Aase syndrome go away on its own?
Last updated September 6, 2026.
No, Aase syndrome does not go away on its own, but the anemia it causes often improves as a child gets older. Aase syndrome is present from birth and comes from a genetic change that affects how bone marrow makes red blood cells and how some bones form. The anemia is usually most noticeable in infancy, and many children improve over the first few years, sometimes enough to stop transfusions or lower steroid doses. Bone and joint differences such as thumbs with an extra bone stay unless they are treated directly. Regular blood counts, iron checks when transfusions are used, and steady follow-up with a hematologist are what keep things stable. Ask the specialist before changing or stopping any treatment, since dose changes need monitoring.
What to do
- Keep the blood counts current: Follow the schedule your hematologist sets, since improvement is measured by hemoglobin and reticulocyte trends rather than by how your child looks.
- Never stop steroids on your own: Corticosteroids are tapered slowly under supervision, and stopping suddenly can cause a serious drop in your body's own steroid levels.
- Watch iron if transfusions are used: Repeated transfusions build up iron, so ask about ferritin testing and whether iron removal treatment is needed.
- Plan hand and arm care early: A hand surgeon or occupational therapist can improve grip and function when the thumbs or forearms are affected.
- Ask about genetic counseling: A counselor can explain the inheritance pattern for your family and what testing is available for siblings and future pregnancies.
- Call for new symptoms: Contact your clinician promptly for unusual paleness, poor feeding, very low energy, repeated infections, or easy bruising.
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