Primary care
Recommendation 1
Chronic transfusion therapy if patient does not respond to corticosteroids, as well as chelation therapy
This information is AI generated and has not yet been reviewed by a specialist physician. AI can make mistakes.
Recommendation 1
Average age of presentation is 2 months, with average age of diagnosis at 3-4 months. Diagnosed with CBC showing macrocytic anemia, along with elevated erythrocyte adenosine deaminase level, and genetic testing can identify a mutation in ~80% of patientsRecommendation 1
Average age of presentation is 2 months, with average age of diagnosis at 3-4 months. Diagnosed with CBC showing macrocytic anemia, along with elevated erythrocyte adenosine deaminase level, and genetic testing can identify a mutation in ~80% of patientsZebraMD is partnering with Ambry Genetics for clinical-grade whole genome testing for rare diseases. Ambry accepts insurance. If you don’t have a physician to order this test, join our referral list and our team will reach out.
Recommendation 1
Red cell tranfusions for the first year of life, after which patients are started on corticosteroids. Bone marrow/stem cell transplantation is definitive treatmentRecommendation 1
Chronic transfusion therapy if patient does not respond to corticosteroids, as well as chelation therapyRecommendation 1
Hematologist. Referral to Medical Genetics Department, if available. Initial virtual care is also available through organizations like TeleRare Health.Follow to receive regular updates to the latest research development on this disease via email newsletter.