Struggling with an Orphan Disease in an Unsympathetic World
Battling a chronic disease can often be a lonely and frustrating ordeal. It doesn’t have to be. Alone in My Universe, compiled by Wayne Brown, presents a series of writings from patients suffering from acromegaly. Based on actual personal experiences, these narratives provide a primer of understanding for others dealing with this chronic, debilitating disease that affects many of the body’s systems. This collaborative effort, written by real people touched by acromegaly, attempts to raise awareness of this low-profile disease. Each patient tells his or her story as it relates to the disease and its complications. Topics include the following: • Handling pre-diagnosis frustration • Dealing with fears of medical treatment and surgery • Managing family issues and work issues • Talking with children • Managing negative energy • Coping with good and bad days • Living life each day With sympathy, empathy, and mutual support, Alone in the Universe shares the heartfelt stories of those suffering from acromegaly to show others that they are not alone in their battle.
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