Treatment Options
Thalassemia is a genetic blood disorder that affects the production of hemoglobin, leading to anemia and other complications. Treatment options vary depending on the severity of the condition and the type of Thalassemia (Alpha or Beta). Common treatments include:
Regular transfusions help maintain normal hemoglobin levels, particularly in severe cases.
Used to remove excess iron from the body, which can accumulate due to frequent blood transfusions.
A potential cure for some individuals, this involves replacing the defective bone marrow with healthy donor cells.
Emerging as a promising treatment, this involves modifying genes to correct the disorder.
Management often involves lifestyle adjustments, monitoring for complications, and consultation with specialists in hematology. Look at the following list of resources and information for assistance.
Resources on Adoption of Children with Thalassemia
CAF is proud to be part of a network of adoption communities throughout the country, and we are committed to providing resources and support for the Thalassemia adoption community.
Our goals are to bring attention to the need for permanent families for children with Thalassemia both in the U.S. and globally, to provide the greater community with resources and information on Thalassemia adoption, and to share the stories and perspectives of adoptive families.
We hope you are inspired by their journeys!
If you are currently in the process of adopting a child with Thalassemia and would like to speak to someone at CAF to discuss questions or concerns, please email info@thalassemia.org.
How Significant is Thalassemia Community Adoption in the U.S.?
Currently, 12% of Thalassemia patients in CAF’s U.S. Patient Database have been adopted from other countries.
The vast majority of these adoptions come from China, although there are families that have adopted children with Thalassemia from Vietnam, India, Afghanistan, Greece, Albania, and other countries.
Many of these families have adopted more than 1 child with Thalassemia:
- 21 of the adoptive families we are in contact with have adopted 2 children with Thalassemia,
- 3 families have each adopted 3 children with Thalassemia,
- and one family has adopted 4 children with Thalassemia.
Links
CAF Adoption Support Program
Support for Parents of Newly Adopted Children with Thalassemia
Frequently Asked Questions
FAQ Sheet on Thalassemia Adoption
Mobile Health Apps for Thalassemia Management
Several mobile health apps have been developed to assist with Thalassemia management, including:
Note: CAF makes this information available to all members of the Thalassemia community and does not endorse one mobile health app over another.
Information on Curative Therapies
- Gene Therapy in Beta-Thalassaemia and Other Hemoglobin Disorders (produced by TIF)
- Bone Marrow Transplant (BMT) in Beta-Thalassaemia (produced by TIF)
- Video on “Gene Therapy: Your Questions Answered” (produced by NORD)
- Webinar on “The Science Behind Gene Therapy” (produced by NORD and ASGCT)
- Webinar on “Gene Therapy Yesterday, Today and Tomorrow” (produced by NORD and ASGCT)