Tuesday, May 26, 2009

Thalassemia and Sickle Cell Disease

Picture this, you have Sickle Cell Disease (a disease of the red blood cell) and you marry a man who is diagnosed (at age 44) with Beta Thalassemia (also a disease of the red blood cell). Now you think to yourself; why didn’t this man know he had a blood disease?

Often people who have Thalassemia don’t know they have it. Sometimes they’re told, “You’re anemic,” and that’s all they’re told.

Thalassemia is similar to Sickle Cell Disease. It is also a genetic defect of the hemoglobin within the red blood cell. Thalassemia, however, is the defect in the number of hemoglobin made in the blood, where Sickle Cell is a defect of the hemoglobin (sickle shape). Either or both of these conditions cause anemia. Some people may have both of these conditions at the same time.

This is where my utter shock comes in. My husband was told by his parents that he was anemic, but at 44 he was officially diagnosed with Beta Thalassemia. My husband is African American and the doctor who diagnosed him is Chinese. The doctor informed him that they have “the same type of Thalassemia.”

Are you getting this? A Chinese doctor and an African American man have the same blood disorder.

There are two issues that come to mind when I remember this story. Firstly, this is another example of my main argument that blood disorders are diseases of humans, not of one race or another. And, secondly, I see the need for better testing/education practices. People should know what their health limitations are, and in result, understand the impact on them having children.

People living with Thalassemia suffer just like people living with Sickle Cell Disease. Just imagine a child of ours having Beta Thalassemia AND Sickle Cell Disease. Luckily, we do not have any children, and thank God I didn’t have to find out what that would be like.

Get informed.
Get tested.

1 comment:

  1. Both are blood disorders. They should not be treated as "ethnic" disorders. NIH is leading the way