Thalassemia is an inherited disorder that affects a person’s ability to produce normal hemoglobin, the protein that carries oxygen in the blood and throughout the body. Patients with thalassemia have a problem with one or more of the genes that are vital to producing hemoglobin.
Better understanding of the causes of thalassemia and careful medical management are improving life expectancy and minimizing many of the life-threatening complications associated with thalassemia, allowing many children with the disease to live productive lives well into adulthood.Today, thalassemia major, once considered universally fatal in childhood, is a chronic condition that can be managed to allow a relatively normal life.
Here at the Dana-Farber/Children's Hospital Cancer Center (DF/CHCC) Thalassemia Program, we provide comprehensive care for children and adults with all forms of thalassemia.
- Doctors who are experts in hematology, transfusion medicine and genetics lead our comprehensive care team. Other pediatric specialists will join your child’s care team as needed.
- We offer unrivaled expertise in thalassemia treatment, including iron chelation therapy and MRI iron assessment, as well as access to the latest clinical trials.
- We have a full-time thalassemia nurse practitioner, who will work with you to identify your and your child’s needs and coordinate your child’s care.
- We also offer access to the DF/CHCC Pediatric Stem Cell Transplantation Program.
- We offer complete diagnostic services at our satellite office in Waltham as well as convenient off-hours blood draw and transfusions.
- Our pediatric nurse practitioner, Jennifer Eile, MS, PNP, works to identify patient needs and coordinate care.
Our program is one of only five centers in the country designated for clinical excellence in thalassemia by the National Cooley's Anemia Foundation. We are also part of a multi-center, international thalassemia research network chosen by the National Institutes of Health.
Our innovative approach to thalassemia care reduces the risk of complications and helps our patients grow up to lead healthy and active lives.
- We offer advanced MRI iron assessment with cardiac MRI to help monitor iron overload from blood transfusions.
- We have extensive expertise in chelation therapy to treat iron overload and prevent complications.
- We provide access to psychological consultations to help children and families cope with thalassemia as well as a thalassemia support group.
- Our extended laboratory hours (Saturday and off-hours) and transfusion site in Waltham ensure that care is as convenient as possible.
Our Thalassemia Program features a team of multidisciplinary medical specialists who understand the unique problems caused by thalassemia and related disorders. The team includes:
- transfusion specialists
- geneticists and genetic counselors
- cardiac and liver MRI specialists for evaluation of iron overload
- gastroenterologists with expertise in liver disease
Our program also includes a full-time nurse practitioner with expertise in thalassemia, who works to identify patient needs and coordinate care for transfusions and iron chelation.
We are happy to provide consultations and second opinions for children and adult patients with thalassemia from other parts of the country and the world. Please call us at 617-355-2457.