Libby Huffer, 45, said she was branded “lizard breath” and “toad” by playground bullies during decades of abuse over her condition. Libby has Neurofibromatosis, a genetic neurological disorder that causes non-cancerous bumps to form on her body wherever nerves are present.
An outbreak of hundreds of tumors multiplied into thousands after she fell pregnant with her daughter Lindsey 23 years ago.
The condition left her suffering from chronic pain that meant even a hug would hurt her.
After sharing her plight, the mum from Fort Wayne, Indiana, US, was offered specialist treatment to reduce the physical appearance of the disorder by daytime TV Show The Doctors.
Last June, she underwent her second electrodesiccation surgery to kill off 1,000 of the ‘bumps’ on her face and the tissue causing the growths.
To lessen the scarring, she then had C02 laser surgery, which smooths out the skin and reduces the appearance of marks.
She’s noticed a ‘huge difference’ in her appearance since her surgery but hopes that others will be more understanding towards people battling with Neurofibromatosis.
“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.
“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.
“The more surgeries I have, the more confident I will become and that will help to erase some of my painful memories.”
Libby was a teenager when hundreds of bumps caused by Neurofibromatosis 1 developed on her skin – the condition affects one in 2,500 people.
She added: “The tumors all over my back cause chronic pain, and the nerves in my feet have a tingling sensation all the time which makes it hard to sleep.
“They can even hurt from simple things like a hug or even if water from the shower hits them in a certain way.
“But I’m not contagious I have a neurological genetic disorder that causes tumours to form on both the inside and outside of the body wherever there are nerves present.
“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.”
Since revealing her battles with the disorder, Libby embraced her mantra ‘If we’re not seen, we can’t be heard’ and started the Facebook page ‘Faces of Neurofibromatosis’ to help unite others with the disorder.
She says the group has helped provide support and further awareness to sufferers.
Libby added: “You have to have NF or be the parent of a child under 18 years old to be a member, everyone in our Family has NF or is a parent of a minor child with NF – everyone is wonderful and very supportive!
“The page was created on 02/12/16 with only two members, myself and my mom – today my page is at 5,000 NF members worldwide.”
Libby and charity Neurofibromatosis Midwest, are fundraising to educate the community further, fund further medical research into the disorder, and more.
