Hi motheroftwins,
I am a bit concerned about the level of care you are receiving. Are you getting an annual evaluation that includes a T2* scan of the heart? This is extremely important at your age to make sure your heart iron load is under control. If you need any advice or help with getting a proper annual evaluation, please contact Eileen at Cooley's. She will help direct you to a center where this can be done, possibly Chicago. With these annual evaluations, you can be sure that you will watch your children grow and thrive. I cannot overstate the importance of the annual evaluation.
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