What Lupus Patients Want Their Doctor to Know
Because lupus can come with so many variables and a high degree of complexity, many people get frustrated in their journeys toward managing the disease. Here, 11 patients opened up about what they wish doctors knew when it comes to the nuances of lupus, and how to better care for those with the disease.
By the time we see you, it may be years since symptoms first began
According to the Lupus Foundation of America (LFA), the disease is difficult to diagnose because symptoms can be so different from person to person. On average, it takes nearly six years for people with lupus to be diagnosed after the first time they notice symptoms.
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That can be true even with “classic” signs, like a butterfly-style rash across the face. For example, Ingrid Pérez-Martin, 41, who lives in Georgia, developed that rash when she was 10, and a few years later experienced Raynaud’s syndrome—which was characterized by numb, swollen fingers and toes. Yet she didn’t get diagnosed with lupus until she was 23, while suffering from immune system issues when pregnant with her first child.
“Living with undiagnosed lupus for 13 years was such a roller coaster,” Pérez-Martin says. “I just felt so frustrated and angry, and that made it more difficult to accept my diagnosis when it finally came.”
We need you to know who’s at higher risk
Another important aspect for screening is recognizing that ...
Source: TIME: Health - Category: Consumer Health News Authors: Elizabeth Millard Tags: Uncategorized healthscienceclimate Source Type: news
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