A woman born with a rare condition says she “just wants her face back”.
Leanna Scaglione was born with Neurofibromatosis Type 2-related Schwannomatosis (NF2-SWN), a rare hereditary condition that causes non-cancerous tumours to grow along the nervous system.
The 32-year-old first discovered that she had the condition as a teenager after doctors found a grapefruit-sized tumour in her lower spine.
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The surgery to remove it left her wheelchair-bound for almost a year.
Since then, she’s had six operations to remove tumours throughout her body, and been on three chemotherapy drug trials to shrink the tumours growing on each auditory nerve.
Earlier this year, the tumour on her right auditory nerve, which was the size of a golf ball, was surgically removed, leaving her completely deaf in her right ear and with temporary facial paralysis.
“When I woke up from my surgery, I could physically tell my face was paralyzed,” Leanna, a personal executive assistant from New York, US, told What’s The Jam.
“I was so scared.
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“Whereas I always knew going into this surgery that I was going to come out deaf.
“It was something that I learned to accept 16 years ago when the tumours were first discovered.
“Any sadness I felt about going deaf had been dealt with years ago… I was ready for this outcome.”
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Leanna’s facial paralysis is temporary, but it has deeply impacted her self-esteem.
She said: “The facial nerve itself is not damaged but since there was a tumour next to it for 16 years, my doctors say it’s been ‘traumatized.’
“Over time, I will regain all movement back in my face.
“It should come back within the year.
“I start facial physical therapy soon, which will help speed up the process.
“Still, I’m not used to having my NF be so visible to people.
“Some days I’m fine with it, but most of the time I feel self-conscious.
“Even when I make my videos for social media, I think to myself, ‘Are people only watching because they are grossed out by this freak or do they actually care?’
“I also think, ‘I look so ugly right now. I just want my face back.’
“No one has ever made comments in person, but I’ve had a few online.
“Mostly they’re questions about what happened or why. I did have a comment left on a video saying, ‘Do people ever think you’re having a stroke?’
“While it may not have been intended to be an insult, it still hurt to know that’s what others might think I look like.”
Despite her ongoing recovery, Leanna, an avid runner, recently completed the New York City Half Marathon and will be running the full New York City Marathon, as well as the Chicago Marathon, this fall.
She said: “I think I’m just most proud of being able to prove to myself that I’m able to do all of this.
“It’s so satisfying to push through and cross that finish line.
“It’s a tangible accomplishment that says, ‘You can do this. You did it.’
“I’ve always been a bit stubborn and competitive, and I suppose NF gave me a lifelong competition that has made me determined to win.”
Leanna will deal with tumours for the rest of her life and faces becoming completely deaf in the future.
She added: “I still have a tumour on my left auditory nerve that will probably have to come out eventually, too.
“Hopefully, when that one comes out, I’ll just go deaf on that side and I won’t have to deal with the facial paralysis again.
“There are also tumours in my spine and right leg.
“They’re stable now, but who’s to say what will change? It’s the unfortunate part of NF.
“There’s no set path or plan that can be followed to help treat it.
“Until then, I’m going to continue running until I physically can’t.
“I’ve come to learn it’s better to plan for short-term goals rather than long-term goals.
“Things change too frequently and there are too many variables that we can’t control.”
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