Living With Thalassemia (p2)
Laurice Compagno M.A., C.C.L.S. - Albany, CA

I always strive to live positively with Thalassemia, but at times it is frustrating having to deal with a chronic illness that consumes an exorbitant amount of time with transfusions, a nightly desferal regimen, constant doctor's appointments, and various other procedures. If I could chose, I would not erase Thalassemia from my life, rather I would change the way illness is managed in our society. The uphill battle for me is not always the medical dimension of the disease, but the bureaucracy that defines the health care system. Insurance is stressful for countless patients. On several occasions, I almost lost my medical insurance and more than once I have been denied coverage due to my pre-existing condition. It was my medical insurance, not ill health, that almost prevented me from attending graduate school because my HMO would not offer me out-of-state coverage. Unfortunately, insurance companies, not doctors, dictate what procedures can be performed, the length of my stay in the hospital, and what medications can be used. Insurance coverage has also been a financial burden. When I worked a s preschool teacher for 6 months, my insurance payments and medical bills exceeded my income.

One of the most difficult aspects of living with Thalassemia is coping with the burden it places on family and friends. My family is extremely supportive and I believe that my Thalassemia has strengthened our family dynamic, but that does not eliminate their worry and stress. Chronic illness can adversely affect the marital relationship as well as the siblings involved. There is s dire need for support services to help manage the stress placed on the family as a result of chronic illness.

With improved technology and medical advances, people with Thalassemia are living longer. Therefore, consideration must be given to the new issues, such a fertility and employment, that arise from an extended lifespan. Support services and outreach programs are critical in helping patients cope with these challenges, but programs such as these are often difficult to access. With budget cuts and rising costs in health care, programs either do not exist or must be eliminated.

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