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DADA2: Working Together to Unpack a Rare Mystery Illness

By August 8, 2023No Comments

When Vanessa was a few months old, a mysterious red, bumpy rash appeared on her arms and legs. It would go away when she was sick with a virus, then come back. Although the rash disappeared for good just before she turned 2, Vanessa became anemic and increasingly fatigued. “She was fading away, losing weight, wasn’t playing,” says Katherine Bell, one of Vanessa’s mothers.

When months of fever and weight loss brought Vanessa to Boston Children’s emergency room, she was admitted for evaluation and seen by Dr. Pui Lee, a rheumatology fellow. He and Rheumatology Program director Dr. Robert Sundel diagnosed her with periodic fever syndrome — meaning Vanessa’s immune system was activated despite no apparent infection.