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Wrotham woman with rare ACNE Syndrome reveals 18 month battle to be diagnosed

A young woman whose life changed forever when she woke up with severe stomach pain has revealed how it took 18 months to finally get a diagnosis after some medics dismissed the problem as 'being in her head'.

Ashley Broszek from Wrotham was fit, healthy and regularly went to the gym before being left barely able to walk.

At the age of 21, she was getting ready for a presentation at university when she noticed discomfort in her abdomen. After putting it down to possible period cramps or urine infection she tried to walk, but the pain became worse.

By the time she arrived for her presentation, Ashley was sweating, shaking, had turned pale and been sick in a bush. Miraculously, she got through her presentation, but that was her last day at university.

Now 25, she's recalled: "It was a pain I had never felt before, it was overwhelming. I just woke up with that pain one day and it has never gone.

"Before I was very fit, very healthy, very active. When you're young, you always think you're going to get better. No one ever thinks they're going to wake up one day and be disabled."

Unable to walk far, Ashley finished her degree from her bed, but she was still without a diagnosis and doctors were unable to find what was wrong.

Ashley in hospital as doctors tried to give her a diagnosis
Ashley in hospital as doctors tried to give her a diagnosis

She said: "I saw NHS doctors who were brilliant. But unfortunately, they don't have the funding and it's just not something they come across much.

"If I had gone into A&E with a broken leg it would have been fixed that day, but like a lot of people with invisible illnesses it can be quite a long journey to actually get a diagnosis."

After searching for a year-and-a-half, she finally came across a specialist who knew what was wrong as soon as she came through the door.

She was diagnosed with Anterior Cutaneous Nerve Entrapment Syndrome (ACNES) - a rare nerve condition where nerves in the abdomen become trapped and cause continuous pain triggered mainly by movement.

Though the condition can come about from injury or sudden weight change, anyone can develop ACNES and may not know why.

Ashley said she put off getting mobility aids but now wishes she had tried them years ago
Ashley said she put off getting mobility aids but now wishes she had tried them years ago

She added: "Getting the diagnosis was an unbelievable feeling. I remember my mum and I just stood there crying and hugging.

"Everyone in the waiting room probably thought we'd just had some really bad news, but actually it was the best news possible. I was elated. It was amazing."

But this also brought on a huge shift in mindset and she is now embracing her new self and no longer feels her disability is a tragedy.

She added: "For two years, I didn't really leave the house at all. When I became disabled, my first thought was that I've got no quality of life anymore. But this was mostly because of my mindset.

"The only thing you can do is change how you feel about a situation, adapt and try to find new ways of finding happiness in things.

Ashley Broszek was active before she suffered from ACNES syndrome
Ashley Broszek was active before she suffered from ACNES syndrome

"I consider myself now to have a full life. I'm not doing my dream job and not as fit and able as I used to be, but I've changed my goals and what I love in life.

"I could sit there and be miserable because the pain is always going to be there. But my misery is optional."

After mourning the loss of her past self, Ashley became dedicated to accepting her new self, where an important step was accepting the use of mobility aids.

The first time she went out with a walking stick, people starring and commenting made her so self-concious she waited months before going out again. Now she wishes she had tried walking aids years earlier.

She added: "If I was in my 80s nobody would bat an eyelid. But unfortunately with me being young, people are going to stare and they still stare. It's not an easy thing, but now I look them in the eye and smile back. Kill them with kindness."

"You've just got to find happiness in what you are now. I do not even notice the stares anymore."

She now loves moulding pottery and expressing herself through fashion on her Instagram page, The Chronic Mermaid.

To her largely young disabled followers, this is the rare positive representation they need.

Ashley added: "Fashion isn't everything, but it is how I express myself. It's self care and it helps you learn to love yourself again.

"People send me pictures of what they're wearing.

"I had a woman message me that she dressed up to go into the garden.

"That's exactly what I want to do with the blog. I'm just going keep talking to people and if I can help one person then that's great."

Read more: All the latest news from Sevenoaks

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