I would highly recommend you contact one of the US Centers of Excellence. Your situation is unusual and it would be best to consult with a thalassemia specialist. You can start by contacting Eileen at CAF so she can direct you to the appropriate center. Let her know the situation that you have the triplicated alpha gene along with a beta zero gene, making you intermedia and now in need of transfusions. It would be best to start on this now so that you have the correct information about which chelators you can safely use before you need to start. The Centers of Excellence are highly recommended for all transfusing thals. Once you start transfusing, it is extremely important to get the annual evaluation including appropriate scans, so that any needed adjustments to the treatment program can be made.
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999
Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org