Louise Benge, of Brodhead, Kentucky, enjoyed a normal, active childhood, including playing running games with friends, the 51-year-old woman explained at a National Institutes of Health (NIH) press briefing in July. Then in her teens, Benge developed crippling pain in her hands.
At first, her physician diagnosed her with arthritis. But tests for arthritis were negative, and when the pain spread to her legs in her 20s, another physician suggested that she undergo arterial vascular surgery repeated every few years. Louise declined the surgery. Eventually, each of her 4 siblings developed identical symptoms.
Kuehn BM. NIH’s Undiagnosed Diseases Program Expands6 New Sites Offer Potential Answers to More Patients. JAMA. 2014;312(6):587. doi:10.1001/jama.2014.9249