After decades of being mocked for the almost 6,000 tumors that cover her body from head to toe, one woman wants to show the world her incredible transformation. Since 46-year-old Libby Huffer appeared on the television show The Doctors to surgically remove tumors caused by a skin disease doctors diagnosed her with at the young age of five, her goal is to spread a message that’s more than skin deep.

How Libby Huffer Survived Living with Neurofibromatosis

When she was only 5-years-old, Libby Huffer was diagnosed with a rare skin condition called Neurofibromatosis Type 1. It’s a genetic neurological condition that causes non-cancerous tumor growths along nerves in the skin, brain, and other parts of the body.[1]

“The tumors all over my back cause chronic pain, the nerves in my feet have a tingling sensation all the time which makes it hard to sleep, even though I’m on 13 different medications. They can even hurt from simple things like a hug or even if water hits them in a certain way.”[2]

Some days, however, the physical pain cannot even compare to the verbal and emotional abuse she has endured since childhood.

“I’ve been bullied and victimized my whole life because of the bumps all over my skin, they cover me from head to toe. For the majority of my life I’ve covered up in long sleeved tops and trousers, but recently I’ve tried being brave by showing more of my skin. I try not to let it stop me.”[2]

“In school kids would pick on me all the time, they called me lizard breath and toad. I had to change my name from Elizabeth to Libby, because whenever I heard my name it reminded me of being called lizard breath.”[3]

What’s worse is that the bullying in school happened before her neurofibromatosis multiplied from hundreds to thousands of growths while pregnant with her daughter, Lindsey.

By November 2016, Libby Huffer had already undergone ten operations in hopes of removing the neurofibromatosis lumps. However, none of the surgeries had been entirely successful, so much so that some tumors even grew back. That’s when sought the expertise of specialists.

Libby Huffer and Her Life-Changing Neurofibromatosis Surgery

“After college, it took two years to get decent paying jobs, it took a lot of interviews without call backs and I worried it was because of how I looked… Currently I’m unemployed and unable to work because of the pain I feel from standing up for long periods of time, all caused by my condition… I haven’t had a boyfriend in eight years, guys seem scared to approach me and relationships never seem to work long-term… Someday it would be wonderful not to have to worry about how I look, or what clothes will hide my bumps.”[3]

And now, she can. Libby’s condition is not completely taken care of yet, but she’s taking huge strides to get there, the first of which has been surgeries that have actually worked! In 2016, Libby Huffer went public about her neurofibromatosis on the show The Doctors, which led to her tumor removal surgeries. (You can watch the video below!)

World-renowned plastic surgeons Dr. Andrew Ordon and Dr. Ritu Chopra, plus surgical breast specialist Dr. Kristi Funk removed almost 1,000 neurofibromatosis tumors from her face, neck, back, chest, and tummy over the course of a few surgeries. What’s more? The surgeons even waived their medical fees which, for a five-hour session, would have cost $23,500.[4]

Upon her reveal, Libby’s daughter Lindsey said, with tears in her eyes, “Now finally you guys can see…what I’ve seen for years.”

What Libby Huffer Is Doing for Other Neurofibromatosis Sufferers Worldwide

On December 2, 2016, Lindsey and her mother created the Facebook page “Faces of Neurofibromatosis” to help unite people with the disorder, provide a safe and supportive community, and fundraise for further medical research.[5]

One Mantra Has Helped Keep Libby Huffer Going

“If we’re not seen, we can’t be heard.”

As cathartic as that realization has been for Libby, she hopes it resonates and helps change the lives of others for the better, whether they have neurofibromatosis or any other disease that makes them feel any less than human.