Mother cruelly mocked for decades over the 6,000 tumours all over face and body shares results from surgery to give her clearer skin
A mother cruelly mocked for decades over the 6,000 tumours covering her face and body shares results from surgery to give her clearer skin.
Libby Huffer, 45, battles with neurofibromatosis, a genetic neurological disorder causing non-cancerous bumps to form wherever nerves are present.
She’s battled the stigma for over 25 years, after fibromas rapidly multiplied all over her body – causing chronic pain that meant even a hug would hurt her.
After sharing her plight, the mum from Fort Wayne in Indiana, USA, was offered specialist treatment to reduce the physical appearance of the disorder by TV Show The Doctors.
She underwent her second electrodessication surgery June 2017 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 appearances of marks.
She’s noticed a ‘huge difference’ in her appearance since her surgery but hopes that others will be more understand towards people battling with Neurofibromatosis.
Libby, a photographer, said: “I am very happy with the results and hope to have the rest of them removed some day.
“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.
“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 childhood 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.
After the first outbreak she had a few hundred, but after falling pregnant with daughter Lindsey, now 23, her hormones caused the tumours to multiply into the thousands.
Strangers would stare, point and make horrid comments about her appearance, including that she had a ‘contagious disease.’
Libby said: “I have been bullied and victimised my whole life because of the bumps all over my skin, they cover me from head to toe.
“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.”
At their most prevalent Libby had nearly 6,000 tumours on her body that raised several inches above her skin.
She believes every aspect of her life was changed because of her appearance – from struggling to find work, day to day interactions and even finding love.
In addition to struggling to defuse people’s misconceptions about her condition.
She added: “The tumours 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.
“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 cause tumours to form on the both 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 further educate the community, fund further medical research into the disorder and more.
She added: “We need to show the greater need for more medical treatment and Physicians for Neurofibromatosis.
“The GoFundMe page is important to me as well as many others in our goal to raise more awareness and funding for NF research for a cure, treatments for NF, symposiums and workshops for Neurofibromatosis.
“I want to thank everyone who has been supportive in my quest.”
To donate to their cause visit: www.gofundme.com/neurofibromatosis-nf-midwest
If you have the Neurofibromatosis and would like to raise awareness, join the community at: www.facebook.com/pg/FacesOfNeurofibromatosis
Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.