05/27/2026
“My mom was covered in painful lesions from head to toe. Doctors kept walking into the room saying the same thing: ‘We’ve never seen this before.’
At first, they thought it might be cancer. She had lost a dangerous amount of weight, her body was overwhelmed with inflammation, and nobody could explain why she kept getting worse. My family went from hospital to hospital searching for answers while my mom’s health slowly deteriorated in front of us.
Eventually, after months of testing, biopsies, and uncertainty, doctors diagnosed her with a rare disease called Rosai-Dorfman Disease, or RDD. We had never heard of it before. And honestly, most doctors hadn’t either.
For years, we kept hearing different opinions from specialists across dermatology, infectious disease, and hematology, but nobody really seemed to know what to do next. Then we met Dr. Luke Chen.
Right away, we could tell he understood this disease differently. He told us about a treatment called lenalidomide and even helped my mom get access to it through compassionate care. Slowly, we started seeing changes. The lesions covering her body began healing. Her strength started coming back. She was finally getting pieces of her life back.
Today, she still deals with fatigue and carries scars from everything she’s been through, but she’s walking on her own again, grocery shopping, cooking, and doing the things she loves.
RDD changed our lives completely. But it also taught us how important it is to find doctors who truly understand rare diseases—and how life changing the right treatment can be.”