A YOUNG woman with a rare condition has launched a fundraising appeal to pay for private treatment after being placed on an 18-month NHS waiting list.
Serab Levent, 25 was diagnosed with cholesteotoma, an abnormal, non-cancerous skin growth that develops in the ear, in 2004.
After her condition was left untreated, Serab developed Bell’s Palsy, paralysis of the facial nerve, on the right-hand side of her face and lost all hearing in her right ear.
After undergoing an eight-hour surgery under the NHS, the cholesteotoma was removed and Serab said she lived a “healthy life”.
But in 2016 the growth returned and Serab, who lives in Prestonville, Brighton, told The Argus that she is once again living in “constant pain”.
She said: “It’s really heart-breaking because I’m living with this constant tinnitus and vertigo that with every step I take, I am on the verge of puking and no one can see it.
“There’s this idea with chronic pain that it must be visual and if you can’t see somebody physically wincing for example, then they must be fine.
“It’s something that really brings you down and makes you feel alone. You think nobody knows what’s going on in your head – you just have to put on a smile and carry on.”
Sareb, an education specialist, was placed on an 18-month waiting list for NHS surgery but was “shocked” to find this waiting period cannot begin until after the Covid-19 pandemic has settled.
After visiting a private consultant in London for a second opinion, Sareb found the previous surgery had left the bone structure in her ear “geometrically tainted”, rendering the ear unable to transfer skin cells and heal itself.
She is now hoping to raise £10,450 to pay for private surgery to correct the ear and prevent further complications.
Sareb said: “The surgery I need is quite urgent because it is chronic infection right by my brain.
“The tissue that has been left between by brain and the infection is incredibly thin due to the surgery that I’ve had, so there’s quite a lot of urgency for it.
“The NHS saved my life as a child but these days, because of Covid, they are so overworked and just cannot handle the pressure of anything else.
“They need so much support and they are trying their best but having what I have is so time critical so I just can’t afford to keep relying on them.”
Sareb originally set out to raise £3,000 of the total cost but the total has now reached more than £7,000.
She said: “My friend suggested a GoFundMe page, which took a lot of convincing as it was something I just didn’t feel right doing – I don’t know why.
“The reaction has been absolutely astonishing and I’m a bit in shock that within two days I met my initial goal.
“Out of guilt and shame I didn’t want to raise the full funds I thought it was my problem and I should be doing this, so I sold my TV among other things.
“I’m just stunned to be honest.”
To contribute to Serab fundraiser, visit https://uk.gofundme.com/f/help-serab-get-vital-cholesteotoma-surgery
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