Who should be on your health care team? The kind of thalassemia you have and the treatments you require will determine exactly who is needed on your team, but in general the thalassemia care team should include a range of specialists, possibly including those listed below. Hematologist A hematologist has expertise in disorders that affect blood, and he or she is the doctor responsible for making the major decisions about your thalassemia care. These decisions include the diagnosis of thalassemia, when to start transfusions and how often they are needed, and the initiation or modification of chelation. Nurse Your nurse (or nurses) may be a nurse practitioner or a registered nurse who is responsible, with you, for the coordination of all your health care needs and may be referred to as your case manager. This is the person you will see and talk with most often. Any questions or concerns you have about yourself or your child with thalassemia should be directed to the nurse. If he or she is not able to answer your question or concern, the appropriate expert will be contacted to address your issue. Typically, the nurse coordinates the transfusion scheduling and annual comprehensive care evaluations. The nurse will also work with you in implementing the recommendations of the thalassemia team and support you and your family in managing thalassemia. Endocrinologist An endocrinologist is an expert in diseases affecting the hormonal systems of the body. They have an expertise in diagnosing and managing diabetes, growth delay, bone weaknesses, overactive or inactive thyroid, pubertal delay, and pituitary and adrenal gland insufficiencies. An endocrinologist is an important member of the thalassemia team because the endocrine glands can be easily damaged by iron. Cardiologist Cardiologists are experts in diseases affecting the heart and blood vessels. They can diagnose and manage heart failure, arrhythmias, pulmonary hypertension, and other heart related issues. Gastroenterologist (also known as a GI) A gastroenterologist is an expert in diseases that affect your digestive tract, which includes the liver. Because the liver is one of the primary organs of iron overload, a gastroenterologist is often consulted on the impact of iron on liver functioning. The gastroenterologist will also make decisions about the diagnosis and treatment of hepatitis and gallstones. Infectious Disease Specialist This professional can help diagnose and treat acute and/or chronic infections that may occur due to thalassemia or its treatment. Obstetrician/gynecologist This specialist can advise people with thalassemia about women’s reproductive health issues, including pregnancy. Your own regular doctor You may visit a pediatrician or internist for ordinary health issues, and it’s valuable to keep that person involved in your health care team. Social worker A social worker is the professional on the thalassemia team who assists patients and families in managing the impact of thalassemia on the individual patient and their interactions with the outside world. Social workers can assist you and your family on topics such as insurance, school performance, employment, and bills. Many social workers also have training in providing counseling and can help families and patients cope with balancing the demands of managing thalassemia with other parts of their lives. Psychologist/Psychiatrist A psychologist is a PhD-level trained expert in providing counseling and psychotherapy. The psychologist can assist patients and family members in coping with the challenges of thalassemia. A psychiatrist, who is an MD, can also help with these challenges and can prescribe medications to help patients when this is needed. Nutritionist People who have thalassemia may benefit from nutritional counseling. A nutritionist is a registered dietician who can provide expert advice on managing your diet and using vitamin and mineral supplements to enhance your health.
Posted on: Fri, 27 Sep 2013 17:15:49 +0000
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