Navigating The Unk nownof Cushing’s Disease (NAPSA)—The Internet has been a boon to helping patients understand their illness, and a majority of people today (68%) will first research their symptoms online to be better informed when speaking with their doctor. Unfortunately, for people affected by a rare condition called Cushing’s disease, 1—2/million-year worldwide, many signs and symptoms, including weight gain, depression, diabetes, fatigue and high blood pressure, are also indicative of otherillnesses. Cushing’s disease is an endocrine disorder, which is caused by a tumoron the pituitary gland at the base of the brain. This tumor causes the pituitary to secrete excess ACTH, a hormone, that in turn stimulates the adrenal glands to release excess cortisol, a vital hormone that regulates metabolism, maintains cardiovascular function and helps the body respond to stress. Most often, Cushing’s disease affects adults between the ages of 20 and 50 years, and more than 70% of cases occur in women. The time to diagnosis for a patient with Cushing’s disease can be several years from the time they notice symptoms. Patients with Cushing’s disease frequently see several specialists and undergo a large numberof medical tests Pituitary Tumor A tumor on the pituitary gland can cause a rare and hard-todiagnose disease with symptoms including weight gain, depres- sion, diabetes, fatigue and high blood pressure. before an accurate diagnosis is made. Lisa Alcorn, 29, of New York City, was diagnosed with Cushing’s disease in 2008, three years after she first started experiencing symptoms. “Being diagnosed with Cushing’s disease was bittersweet; I finally had an answer and felt a sense of relief, but I still had so many questions. There waslimited information about the condition available for my endocrinologist to share with me, and my Internet searches provided disappointing results. It was, and still is, very challenging to deal with, not only for me, but also for my family.” There are a number of signs that help differentiate Cushing’s disease from other diseases. They include having a “moon face” (round, red and full), rapid weight gain resulting in central obesity, reddish-purple stretch marks, easy bruising and fractured bones. Often, patients have an odd coupling of symptoms that can manifest physically, hormonally or by metabolic or cardiovascular effects. Regardless of the signs and symptoms, an important factor affecting how quickly a diagnosis is made is a patient’s persistence and self-advocacy. But when dealing with a rare disease, becoming well informed can be difficult. The unusual combinations of symptoms and unexplained clinical findings associated with Cushing’s disease can be puzzling. More publicly available information may help increase patient-physician dialogue, potentially allowing physicians to more easily recognize the symptoms and reach a diagnosis more quickly. Uponreflection of her journey to diagnosis, Lisa said, “I find the limited availability of resources for patients with this condition troubling in comparison to the abundance of medical information accessible to the public.” For more information please visit www.Cushingsdisease.com.
