Given the paucity of affected individuals reported and the relatively novelty of this condition, there are currently no specific management and surveillance guidelines for intellectual disability with persistence of fetal hemoglobin syndrome. As no cure for this condition is available yet, symptomatic treatment should be established based on the occurrence of clinical manifestations.
General advice includes:
- Assessment by a Clinical Geneticist.
- Assessment by Neurology, as required, and symptomatic management of neurologic involvement/seizures.
- Developmental assessment.
- Referral to speech, physical and occupational therapies.
- Ophthalmologic evaluation.
- Genetic counselling should be made available to parents.