Specialties & Conditions Thalassemia Program
Thalassemia Program
The comprehensive Thalassemia Program at Lurie Children’s cares for over 130 children and adults with all forms of thalassemia and is the largest thalassemia treatment center in the Midwest. Our Thalassemia Program is a nationally designated Thalassemia Care Center recognized by The Centers for Disease Control and Prevention. Our specialists have extensive experience in treating thalassemia and hemoglobin-based disorders and provide the highest quality care for our patients.
The Lurie Children’s Difference
We work to improve the health and well-being of patients affected by thalassemia in a kid-friendly, family-focused environment. We provide comprehensive treatment, offering expert clinical care, a range of support services to assist families, community outreach, education and research into the nature, causes and treatments of hemoglobin disorders.
The thalassemia program is an active participant in the NHLBI-sponsored Thalassemia Clinical Research Network (TCRN). It has been designated a “Thalassemia Treatment Center of Excellence” by the Cooley’s Anemia Foundation. We’ve also received funding from the Centers for Disease Control and Prevention (CDC) and other federal agencies to perform research studies on the prevention of blood borne infections and other complications of thalassemia, and to enhance comprehensive care.
Our program actively collaborated with the Illinois Department of Public Health to begin universal newborn screening for thalassemia starting in 2008. As a result, families are able to confirm the diagnosis and receive specialized care for their infants as early as possible to prevent complications.
What to Expect
Complications from the disease and its treatment can include heart problems, liver damage, diabetes, infertility, growth failure and thin or deformed bones. Our specialists are trained to treat children with thalassemia, meet their specific needs and counsel all family members on preventive treatment measures and serious complications.
Our pediatric nurse practitioner evaluates every thalassemia patient during visits for their routine transfusions under the supervision of a hematologist. A nurse provides continuing education and monitors compliance with chelation therapy. A social worker provides support regarding the diagnosis and therapy, and identifies all necessary resources for the family.
Support services are integral to our approach and we sponsor numerous programs, such as a parent to parent networking, community education and outreach, annual social activities for patients and their families, scholastic achievement programs and a formal program for transitioning patients to adult-centered care.
Our Specialists
On our collaborative team, we have four pediatric hematologists, a nurse practitioner, a clinical nurse specialist, a certified genetic counselor and a social worker. The team has worked with families with hemoglobin disorders for many years.
Appointments
If you’d like to request an appointment with one of our specialists, call 1.800.543.7362 (1.800.KIDS DOC®) or visit our Appointments page for more information.
Philanthropy
Your support is vital in helping us continue to make a difference in the lives of patients and families. Lurie Children’s relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation at foundation@luriechildrens.org or call 312.227.7500.
