To us and the agency, my thalassemia is nothing but a plus. It in no way compromises my ability to be an awesome parent. In fact, it makes us better parents of a child with thalassemia because we already know all about it. We didn't have to research it for one second. While thalassemia intermedia is very different than thalassemia major, we definitely know what it is like to live with a chronic illness.
I know what it feels to grow up feeling “different” and having a rare disorder.
I’ve dealt with the complications.
I’ve taken Desferal and stuck myself with a needle every night.
I drank down Exjade.
I’ve been in the MRI doing countless breath holds for the Ferriscan.
I’ve sat in the hospital and had a transfusion.
I’ve had labs done hundreds of times.
I know that the most important thing about living with thal is compliance: to your transfusion regimen, to chelation, and to all of your treatments and tests.
The same way my family has always been a great support to me, I will do the same for my daughter.
The Cooley's Anemia Foundation supports patients with thalassemia.