Published: 08:00, 09 June 2014
| Updated: 08:53, 09 June 2014
A former hairdresser who has a rare growth on her brain that makes her feel as though she is “living in a boat” is looking to raise funds for the charity that supported her.
Katie Barnes, 46, of Bonham Way, Northfleet, became aware something was wrong in April 2012 when the hearing in one of her left ear began to suffer.
The mother-of-one said: “I thought I must be going deaf.
“My doctors sent me to a rheumatologist as I was getting pains and I was diagnosed with fibromyalgia, which is aches and pains. I went back to my doctor to say this deafness was getting silly and I’d been stumbling at work.
“They gave me an MRI scan and then said ‘I’m sorry to tell you, but you have an acoustic lesion’.
“They had to inject me with a dye to check it’s not cancerous. I was told 20 in a million people are diagnosed with this every year.”
Mrs Barnes lives with husband Paul, 46, and daughter Rebekah, 20, who suffers from syringomyelia, a condition where a tube-shaped cavity forms within the spinal cord and fills with fluid causing pain.
It can expand and elongate over time, pressing on, and damaging, the spinal cord.
Mrs Barnes, who worked at JM Hairdressing in Dover Road East, Northfeet, is determined to keep battling against her lesion.
She continued: “People normally think they’re going a bit deaf. It’s benign but it’s on the brain stem and we’re going to watch it. If it doesn’t grow you get a hearing aid and they leave you as you are. The tumour affects your hearing and your balance.”
She has already undergone gamma knife radiosurgery, which involved blasts of radiation to stop the tumour growing.
She said: “ I had that in January but I’ve got worse and have had to move from walking sticks to a frame.
“People are so shocked at how this has disabled me in the last year. This tumour is often not found until later. People presume their hearing is going.
“That’s why I’ve decided to throw myself into doing some fundraising for the British Acoustic Neuroma Association.”
Fundraising begins on Sunday, June 8 with a pamper evening at the Gravesend Theatre Guild in Vale Road from 2pm to 6pm.
Mrs Barnes added: “I want to raise awareness and let people know that when you’re disabled, your life isn’t over. You don’t give up.
“I’m doing a university degree in humanities in October and I’m getting some specialist equipment so I can write or look at a computer screen.
“It feels like I’m living in a boat all the time. I’m always moving and the world just revolves around me. It’s extremely debilitating and it’s difficult not knowing what the future holds.”
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