Two-year-old Vanessa had survived the unthinkable: two massive cerebral hemorrhages, nine days apart. Katherine Bell and her wife Nancy Mendoza felt immense relief at their daughter’s close call. But they wanted to know more. What had caused Vanessa’s strokes? Would there be more? Was the cause treatable?
The strokes were the culmination of a mysterious illness that had started with a rash. Because of high levels of inflammatory proteins in her blood, Vanessa’s rheumatologists, Pui Lee, MD PhD and Robert Sundel, MD, had given her a provisional, somewhat vague diagnosis of periodic fever syndrome.
“In rheumatology, we have to be comfortable with operating with a lot of unknowns,” Lee says.
But the strokes occurred despite three different anti-inflammatory treatments, which worked only temporarily. Bell, less comfortable with the unknowns, began searching the medical literature.
“It helped me feel calmer,” Bell says. “The more information I have, the less out of control I feel.” …