For more than 25 years, Libby Huffer suffered from neurofibromatosis: a genetic neurological disorder which causes non-cancerous bumps to form all over the body wherever nerves are present.
At the beginning, when Huffer was still a teenager, she only had a few hundred tumors across her body. That alone seemed bad enough, but when she fell pregnant with her daughter Lindsey – who is now 23 – the change in her hormones caused the bumps to appear in their thousands.
And, while the tumors aren’t fatal, they make day-to-day life extremely difficult for people with the condition.
“The tumors all over my back cause chronic pain, the nerves in my feet have a tingling sensation all the time which make it hard to sleep,” Huffer explained. “They can even hurt from simple things like a hug or even if water from the shower hits them in a certain way.”
However, after enduring more than two decades ofneurofibromatosis, Huffer made an appearance on “The Doctors”, a TV show in which medical professionals offer advice to people who are dealing with unusual or potentially embarrassing conditions. Upon sharing her story, Huffer was offered electrodessication surgery.
The surgery is a specialist treatment which kills off the bumps and eliminates the tissue causing the growths.
Huffer, who is from Indiana, leaped at the chance to undergo the procedure. In June 2017, she underwent the operation to remove a thousand of the painful tumors from her face and neck. Then, to reduce scarring, Huffer had CO2 laser surgery.
The healing process was slow, but Huffer could see improvements from the beginning.
“I am very happy with the results and hope to have the rest of them removed some day,” she said.
“I have had about 1,000 of the fibromas removed so far. My friends and family say that I look great and they notice a huge difference.
“My life hasn’t been any different since surgery other than I have raised lots of awareness for NF, which has always been my biggest goal.”
The condition is incredibly rare, and only affects 0.04 per cent of the population – but Huffer’s case was particularly severe. Thanks to the treatment, though, she can now get back to living a relatively normal life, and is able to avoid the stares and heartless comments she used to receive. Here’s how she looks since the scars have healed:
“There’s still a long way to go to heal the emotional damage I’ve undergone over the years, but I know that will only improve over time,” she said. “The more surgeries I have, the more confident I will become and that will help to erase some of my painful childhood memories.”
“I have been bullied and victimised my whole life because of the bumps all over my skin, they cover me from head to toe,” Huffer explained. “In school kids would pick on me all the time, they called me lizard breath and toad.”
“I am a human being too, all I want is to be adored and cared for like anyone else. Instead of making comments, I wish people would talk to me rather than stare like I’m a circus freak, it just makes me feel really uncomfortable.”
Now, however, she has a new boost of confidence, and is glad to be rid of at least some of the pain and discomfort she has felt for more than half her life. Hopefully, she will find treatment for the remaining tumors very soon, as nobody deserves to suffer from such a debilitating condition for so long.