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28-Year-Old Woman with Lupus Finds Peace of Mind at HSS

In 1998 when Allison Belcher was just 17 years old, a routine medical exam revealed that there was “something wrong with her blood work.” She was in high school, felt great, and the idea of having a medical problem was far from her mind. Still, Allison visited a rheumatologist, as her general practitioner had recommended, who took more tests, suggested a medication and told her that he suspected lupus.  Allison didn’t know much about lupus, and, since she didn’t feel sick, decided against taking the medication. In the months that followed, Allison tried to put thoughts of lupus out of her mind, unless she was on her way to a yearly medical checkup. 

Three years later, Allison thought her aching joints, fatigue and throbbing chest were a sign that she was coming down with the flu. She rested, expecting to recover. Instead, her temperature spiked and the pain in her chest became so severe that she had difficulty sleeping. Her doctor sent her to the emergency room for tests where she learned that the lining of her heart had become inflamed. Allison was experiencing her first lupus flare up, one of many that would occur in the coming years. Steroids treated the acute condition, but the lupus symptoms didn’t abate entirely, despite her following a medication regimen. There were also side effects from the treatments. “Some drugs upset my stomach and others gave me nose bleeds,” Allison recalls. As she continued to seek help from her doctor, she grew frustrated. “I felt he saw everything in terms of my lupus, even when I thought it might not be related,” she recalls. As her months and years of treatment continued, she grew more discouraged. “I just couldn’t see where it was going with my doctor,” she said.

In 2007, Allison sought the help of rheumatologist Dr. Dalit Ashany at Hospital for Special Surgery. “During our first meeting, I got the tangible feeling that she cared,” says Allison. Dr. Ashany listened to her story and suggested that the two of them make their patient-doctor relationship a “partnership.” Allison asked many questions and also shared her fears, among them how she would be able to handle a pregnancy. “She took my concerns seriously,” says Allison, even telling her that when she was ready to have children that the two of them would sit down and make a plan. Dr. Ashany also made some changes to Allison’s medications, which improved her quality of life. “I used to come home from work and go to sleep,” says Allison. “Now I have much more energy.”

Image: Allison Belcher

Graphic: Allison Belcher