LIVING WITH THALASSEMIA
This site was created to inform people of an inherited blood disorder called Thalassemia Major, also known as Cooley's Anemia, and to bring patients and families together for support and education on Thalassemia.
I was born with Thalassemia Major. My Father also had Thalassemia Major and my Mother has the Thalassemia trait. My Father passed away at the age of 48 from the complications of this fatal blood disorder.
I am 33 years old and have been receiving transfusions every 4 weeks at Strong Memorial hospital since I was two. My hematocrit (blood count) usually is anywhere from 25-30 before transfusions. If my blood count is below 30 I receive 3 bags of washed packed red cells. If my blood count is 30 or above I receive 2 bags of washed packed red cells. A normal blood count for a woman is 35-40. For a male a blood count would be 40-45.
Patients with Thalassemia Major require transfusions because of blood cells that contain little or no hemoglobin. Usually two normal parents that both have a Thalassemia trait will pass on this disorder to their children not knowing that they were both carriers of the Thalassemia trait. When two Thalassemia traits get together a child will inherit this blood disorder.
I started this web-site to inform people and to make new friends. I have met so many wonderful people from this web-site. I thank you all for your kindness. Please feel free to sign the guestbook and let me know how I am doing. Thanks!
Also, I need your input! Let me know what you would like to see here and I will try to get it started.