‘The tumors will never stop… I just want my face back’: Woman, 32, born with ultra rare condition LAMENTS

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A 32-year-old woman born with an ultra rare condition that causes grapefruit-sized tumors has lift lids on her frustrations after having multiple surgeries.

The Day She Discovered the Tumor

Leanna Scaglione, 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. 

What She’s Facing

Leanna 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.

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

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Growing up, She Had it Tough

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. 

Two More Tumours

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. 

Auditory brainstem implant

‘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. 

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Ola Alabi
Ola Moses is a certified writer, He writes technically and creatively. He is the CEO of WORDSWORTH, a house where writing is made easier for all. He is a content creator at EsB TV, since 2019. He is a young man that showcases professionalism in all that he does, he was announced as Child and Green Foundation Person of the Year 2018, one of his many lists of honours.

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