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Washington Post profiles adult woman living with NF

By August 11, 2016January 17th, 2024CTF in the News, Publications

An incurable disease covered her face in tumors. She had to learn to like herself.
Washington Post
August 10, 2016

BALTIMORE — At first, Janet Miller knew only that she had scoliosis. And that was enough. Enough to explain why she always felt different. Why she had trouble learning to swim and ride a bike. Why she spent her 13th year in bed, after doctors operated on her spine and wrapped her in a cast that stretched from the top of her head down to one of her knees.

And it was the reason, she thought, that when she was a teenager, her mother told her, “Only someone kind would want to be with you.”

It was enough to make her want to retreat from the world during her high school and college years in Western Pennsylvania, averting eye contact and skipping social settings.

But in her early 20s, when she was living in Southern California and began to notice small bumps on her skin, doctors told her that there was something else: neurofibromatosis (NF), a condition that would cause tumors to develop throughout her body, mostly on the surface of her skin.

It was incurable and progressive.

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