What in the world is Thalassemia?

The little boy we are adopting has a blood disorder called thalassemia. It is a relatively rare disease here in the states and many people have asked me about it. Thalassemia is the name for a group of blood disorders that are genetically passed from parent to child. It is not contagious in any way. Essentially those who inherit the disorder will have a mutation in their genes and it will cause damage to their red blood cells. The outcome is severe anemia.

There are many different types of thalassemia ranging from mild to severe. The most severe form is alpha thalassemia and most often results in stillbirth. The second most severe form is beta thalassemia major. This is the form that our son has. It is also referred to as Cooley's Anemia. It results in consistent damage to the red blood cells and requires frequent blood transfusions and iron removal medicine to remain healthy.

There is still the idea even within the medical field that these children do not live long, but recent improvements in medicine are allowing them to live much longer. If they follow their treatment plan many live long, healthy lives. They play sports with their friends. They run around in the summertime giggling and jumping in sprinklers. They live a very normal life other than having "transfusion days" and taking daily medication. There is always the risk of complications such as rejection of new blood and damage to organs, but those risks are becoming fewer and fewer thanks to medical advancement.

Here in the states we are blessed to have the medical technology that these children need to survive. In China and many other countries they do not. Currently China has a blood shortage and there is not enough blood for all their transfusions. Sadly, many of these kids are dying because of this shortage. China also does not have the medicine to remove the iron build up in their blood from all the transfusions. The iron build up leads to organ damage and eventual early death. The iron removal therapy is called chelation. Once brought to the states the iron buildup can be slowly removed.

If you are considering adoption then consider these kids. They need to be adopted by those with western medicine and they have a disorder that is very treatable. We often fear the unknown, but don't pass them up because of a strange sounding blood disorder that is so very treatable.

Hope that helps with any questions!  Feel free to ask any other questions I didn't answer.


  1. Hey, there! I just came across your blog on pinterest as I was looking for China adoption info. We are in the process of adopting a little guy (our dossier should be to China in the next week or two!) who has alpha thalassemia minor. We were really nervous at first not knowing what this meant, but we have learned that more than likely he will experience very little to mild anemia. If his condition turns out to be more serious, we are planning on embracing it and doing what we can. Education is so important in taking away those fears and "what ifs!" Thank you for sharing this:) PS I would love to purchase on of your necklaces if you have some available still!

    1. That's great! Have you found the facebook group for adoptive parents of children with thalassemia yet? It's a great resource! If not feel free to find me Katie Hurst (with the adorable Chinese boy in my profile pic) and I'll add you to the group.