Living With Thalassemia (p3)
Laurice Compagno M.A., C.C.L.S. - Albany, CA

f I could advise clinicians, I would encourage them to make every effort to humanize health care. I respect my doctors and place much trust in them. Doctors are inundated with a large volume of patients, research, and education, thus making it easy to lose sight of the meaning of medicine-healing. Healing goes beyond prescriptions and procedures. Healing is listening, caring, answering questions, being honest, and treating a patient as a human being. Collaboration among disciplines is especially important with Thalassemia because the disease affects so many physiologic systems. The patient and family must be seen as an integral part of the team and children must be encouraged to be proactive in their own care.

I must emphasize the importance of specialized Thalassemia centers and centers of excellence for specific diseases in general. Thalassemia centers across the United States are few and extremely difficult to access. Health care is decentralized, due to lack of funding, which is also problematic. Many doctors are not informed about Thalassemia and the complexities of the disease. Consequently, it is often up to the patients to educate them. As the survival rate of patients increases, a benefit of specialized care, it is imperative that we strive for standardized and centralized Thalassemia care. A multidisciplinary team approach of experts, working together, can greatly improve the quality of a patient's life.

Despite the challenges I face, I would not change the fact that I have Thalassemia. I would only change the bureaucracy that underlies disease in general. I have come in contact with many amazing individuals with Thalassemia who have become some of my closest friends. It is difficult to witness others fighting the same battle and it is devastating to lose loved ones to this disease. I will never get over the death of my friends, rather I have integrated the grief into my life. I carry a torch in my heart for them as I try to seize each day and live life to the fullest.