Woman, 32, born with ultra rare condition that sees her grow lumps as big as GRAPEFRUITS reveals her latest health fears after multiple surgeries

A woman born with an ultra rare condition that causes grapefruit-sized tumors has revealed her latest health fears after having multiple surgeries. 

Leanna Scaglione, 32, first discovered she had Neurofibromatosis Type 2-related Schwannomatosis when she was a teenager after doctors discovered a massive tumor in her lower spine.  

The rare condition, also known as NF2-SWN, causes non-cancerous tumors to grow along the nervous system. 

Scaglione, an executive personal assistant from New York, had the tumor on her spine removed, which left her wheelchair-bound for about a year. Since then, she has undergone six other procedures to remove tumors throughout her body. 

Recently, she had a golf ball-sized tumor removed on her right auditory nerve which left her completely deaf in one ear and gave her temporary facial paralysis. 

Leanna Scaglione, 32, was diagnosed with Neurofibromatosis Type 2-related Schwannomatosis at 16. She has temporary facial paralysis after she had a golf ball-sized tumor removed from her right ear in January

The rare condition, also known as NF2-SWN, causes non-cancerous tumors to grow along the nervous system. During an MRI for a dancer injury when she was a teenager, doctors diagnosed her 

Though her facial nerve was not damaged, her doctor said that the 16-year-old tumor that sat next to it all that time left the nerve 'traumatized' 

'Some days I'm fine with it, but most of the time I feel self-conscious,' Scaglione said. 'I just want my face back.' 

Prior to her diagnosis, Scaglione was an aspiring ballerina who suffered a dance-related hip injury at the age of 16. 

An MRI soon revealed her rare condition that left her 'unable to walk and stand.' 

'I was not able to stand upright on my leg with full pressure for more than like, five seconds,' she said. 

After about a year, she was able to gain normal mobility again as she 'slowly but surely' continued to 'live out' her life and learned to walk again. 

While she got a taste of normalcy for a bit, doctors soon discovered two more tumors inside each of her ears. 

The one growing in her right ear doubled in size every six months and impaired her hearing and balance. 

'I have to work through it and hopefully it'll come back the same way that my leg was able to come back,' she said. 

During her tumor removal surgery on her ear, Scaglione had an auditory brainstem implant installed. 

An auditory brainstem implant is a device that bypasses the cochlea and auditory nerve to deliver a sensation of sound for people with extreme hearing loss. 

After her procedure in January, Scaglione no longer had a cochlear nerve to attach a cochlear implant to, so she had to get an auditory brainstem implant instead. 

'It was something that I learned to accept 16 years ago when the tumors were first discovered,' she said. 

During her tumor removal surgery on her ear, Scaglione has an auditory brainstem implant installed. Though she doesn't understand or hear language through the implant, she hears buzzing that help her signal specific things

Despite her setbacks, Scaglione decided to run the United Airlines NYC Half Marathon in March and raised money and awareness for her condition as she did so

'Any sadness I felt about going deaf had been dealt with years ago... I was ready for this outcome.' 

Her implant was placed behind her ear and travels down into her brainstem with electrodes.

Though she doesn't understand or hear language through the implant, she hears buzzing that helps her signal specific things. 

'It's just incredible that I'm even able to hear anything because it is fully deaf over there. Deaf as a doornail,' she said. 

What Scaglione wasn't prepared for was temporary facial paralysis, which has severely impacted her self-esteem. 

Though her facial nerve was not damaged, her doctor said that the 16-year-old tumor that sat next to it all that time left the nerve 'traumatized.' 

'Some days I'm fine with it, but most of the time I feel self-conscious,' she said. 

'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?".'

She is expected to deal with her recurring tumors for the rest of her life and could possibly become completely deaf in the future. 

With one of the tumors sitting on her left auditory nerve, Scaglione hopes that once the mass is removed, she won't 'have to deal with the facial paralysis again.'

Despite her setbacks, Scaglione decided to run the United Airlines NYC Half Marathon in March and raised money and awareness for her condition as she did so. 

As she ran, she told The New York Post that she experienced 'some little "whoopsy daisy" moments,' but they didn't stop her from reaching the finish line. 

'I think I'm just most proud of being able to prove to myself that I'm able to do all of this.' 

She is currently taking part in three chemotherapy drug trials to help shrink the tumors growing on her auditory nerve

Scaglione also has tumors growing in her spine and leg that are currently 'stable,' though she said that could change. 'It's the unfortunate part of NF. There's no set path or plan that can be followed to help treat it'

'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.",' Scaglione said. 

She is currently taking part in three chemotherapy drug trials to help shrink the tumors growing on her auditory nerve. 

Scaglione also has tumors growing in her spine and leg that are currently 'stable,' though she said that could change. 

'It's the unfortunate part of NF. There's no set path or plan that can be followed to help treat it.' 

Scaglione has made it her mission to continue running until she 'physically can't.' 

'Things change too frequently and there are too many variables that we can't control,' she said.  

'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,' she added. 

Scaglione has plans to participate in the six major marathons in Boston, New York City, Tokyo, London, Berlin and Chicago, with hopes of earning the Six Star Medal. 

'I have my heart set on that now too,' she told The New York Post.