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Can Aase syndrome go away on its own?

Updated Oct 20, 20262 min readAnswer
On this pageShort answer How Aase syndrome is managed Common questions Related questions Sources
Short answer

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.

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How Aase syndrome is managed

1Keep 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.
2Never 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.
3Watch iron if transfusions are used:Repeated transfusions build up iron, so ask about ferritin testing and whether iron removal treatment is needed.
4Plan hand and arm care early:A hand surgeon or occupational therapist can improve grip and function when the thumbs or forearms are affected.
5Ask about genetic counseling:A counselor can explain the inheritance pattern for your family and what testing is available for siblings and future pregnancies.
6Call for new symptoms:Contact your clinician promptly for unusual paleness, poor feeding, very low energy, repeated infections, or easy bruising.

Common questions

Can Aase syndrome go away on its own?

No. Aase syndrome is caused by a change in the genes that guide bone marrow and bone development, and that underlying change stays for life. What can change is the anemia. Many children need red blood cell transfusions in the first year, then respond to corticosteroids, and some see bone marrow function improve enough that treatment can be reduced under close monitoring. Skeletal features such as triphalangeal thumbs, narrow shoulders, or cleft palate do not correct themselves and are managed with surgery or therapy when they limit function. A hematologist and a geneticist should guide care and track blood counts over time.

About this page. Written and maintained by the Pymander Health team. Last updated September 6, 2026.

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