Survey Shows Lupus Is Difficult to DiagnoseMarch 23, 2002
A survey conducted by the Lupus Foundation of America suggests that more than half of the people afflicted with lupus suffer at least four years, and see three or more doctors before obtaining a correct diagnosis, reinforcing the need for greater awareness of lupus symptoms among patients and doctors alike.
The survey of more than 1,000 LFA members also revealed that two of three lupus patients experience complete or partial loss of their income because they are unable to work, and that one in three are permanently or temporarily disabled by the disease. One of three patients responding to the LFA survey reported they had another autoimmune disease in addition to lupus, and almost half had another family member afflicted with an autoimmune disease. Autoimmune diseases like lupus often run in families.
Nearly half of the survey participants (49%) received their diagnosis of lupus after being examined by a rheumatologist, a medical specialist who treats diseases of the connective tissue. Four of ten lupus patients are being treated by three or more doctors, and take six or more medications to treat symptoms of the disease. Most reported they are coping well with lupus (78%), and that other family members are understanding and supportive (72%). People with lupus named other family members (84%) and friends (72%) as their primary support network. The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.