Rare Skin Disease Leaves Woman Covered In Almost 6,000 Tumours
Please note: this article contains images of a medical nature.
A rare skin disease has left a woman covered in almost 6,000 small tumours across her body.
Libby Huffer, 44, was diagnosed with Neurofibromatosis Type 1, a rare skin disease that causes non-cancerous lumps, when she was five years old.
Huffer, from Fort Wayne in Indiana, USA, lived a happy, normal life until her teenage years when hundreds of bumps began to develop on her skin.
In 1993, while pregnant with her daughter, Huffer’s hormones caused her tumours to multiply into the thousands. Now she has more than 5,500 tumours from her forehead to her feet, which has caused her to suffer with chronic pain.
She is trying to raise £17,500 for life-changing treatment.
Despite ten operations to remove the lumps, surgery has failed and some of the tumours have even grown back.
Huffer’s last hope is for specialist treatment to obliterate thousands of the tumours in a five hour session.
Recently she braved showing her skin in public in the hope of trying to attract funding for the treatment.
This was particularly difficult for Huffer, who had been subjected to bullying during her school years and had even changed her name from Elizabeth to Libby to avoid the painful reminder.
“The tumours can grow from any nerve in my body, there must be over 5,500,” she explained.
“I call myself the bumpy person as some of the tumours rise up a couple of inches in size above my skin and look like bumps, the older I get the bigger they will become and more will grow.
“I tell children that I’ve been kissed by angels and they don’t say anything, but most adults don’t know what the condition is so I have to explain it.
“The tumours 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.”
She continued: “I’ve been bullied and victimised 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.
“Someday it would be wonderful not to have to worry about how I look, or what clothes will hide my bumps.”
When she was a child, Huffer was with neurofibromatosis, a condition that both her mum and grandmother have battled with their whole lives.
Children of parents with NF have a 50% of inheriting the condition, which caused the hundreds of birthmarks on Huffer’s skin to develop into hard bumps.
She added: “When I was a kid I found out I had it, it made me worry about my future and what I would look like when I grew up.
“We have a history of NF in my family, I had a lot of birthmarks and knew that inheriting the condition would lead to tumours.”
Every aspect of her life has been affected by the condition, from day-to-day interactions to getting jobs and even finding love.
She revealed: “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.”
She added that her condition has also attracted bullying and unwanted stares: “I can’t even go for groceries without someone saying ‘what’s that all over you’ or pointing at me with their kids saying ‘look at her’.
“I’m not contagious, I’m a human being too, all I want is to be adored and cared for like anyone else.
“I wish people would talk to me rather than stare like I’m a circus freak, it just makes me feel really uncomfortable.”
After ten failed surgeries to cut out the tumours, Huffer has started raising money for pioneering electrodessication surgery that will use an electric current to kill the neurofibroma tissue in her body.
The five-hour session which costs $23,500 (£17,500) could allow her a pain-free life without the stares and taunts from people for the first time in three decades.
She added: “My life would change so much if I had the surgery.
“I’d have a higher self-esteem, not be held back because I feel ugly and I would have less physical pain.
“It’s amazing to imagine that in one afternoon I’d have more than 5,000 bumps removed and once I’ve healed, I would have nice, smooth skin for the first time in my life.
“While it won’t stop them from coming back it would stop the ones I have already from growing more, it would be life changing and I want it so bad so I can have a normal life again.”
Neurofibromatosis Type 1 is caused by a gene mutation and causes the growth of tumours along the nerves in the skin, brain and other parts of the body – affecting one to 25,000 worldwide in varying severities.
Diana Haberkamp, executive director of Neurofibromatosis Midwest, said: “People could live with this condition if they weren’t treated so badly.
“Any tumour removals even if it’s only a few can make a person feel emotionally much better and happier about themselves.
“Some of our community have struggled to find work and have been told that they should be in the circus or freak show, which is horrible.
“Pain management is also one of the main problems of NF, there are people who suffer due to tumours under the skin that aren’t visible, which can lead to limb loss and a loss of eyesight too.
“Specialist treatment is really important as no two tumours behave the same, they can wrap themselves around the organs and it takes a lot of experience to understand them.
“We dream of a day when we find a cure, but until then we want people have a concept of NF and understand issues caused by the condition.”
Libby is fundraising for treatment at www.gofundme.com/libbysnfsurgery. More information about the condition can be found by visiting http://www.nfmidwest.org.