Ashley Jernigan was born with an unidentified strain of neurofibromatosis, a rare genetic condition
The thought of leaving her house often leaves Ashley Jernigan paralyzed with fear.
“Every day is a battle,” she tells PEOPLE. “People think I have AIDS, they refuse to take my order in restaurants … it makes me feel like, ‘Why was I even born?’” The tumors multiplied and grew more painful once she became pregnant with her first child, Darnell, when she was 20 years old. There is no definitive cure for neurofibromatosis. Patients can have tumors surgically removed, though tumors can grow back. Others turn to opioids and pain medication, or alternative therapy like meditation or acupuncture to manage the pain.
Misconceptions about neurofibromatosis — that it’s contagious, that it’s a sexually transmitted disease — often exacerbate bullying and lead patients to feel anxious, depressed and isolated, Kim Bischoff, executive director of the Neurofibromatosis Network, says.
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