Brave Cuckney woman discovers she has rare brain disorder after going to doctor’s with BACK pain

21-year-old Charlotte is due to have major brain surgery after Christmas
21-year-old Charlotte is due to have major brain surgery after Christmas

An inspirational 21-year-old Cuckney woman who went to the doctors with back pain has found out she has a rare brain disease and needs major surgery.

Brave Charlotte Chapman-Hart complained of lower back pain so was sent to have MRI scans - but doctors found she had a rare disease called Chiari malformation.

This condition means to lower part of the back of her brain drops down into to top of the spinal canal. Surgeons will cut out four to six inches down the back of her head to allow for the swelling.

Charlotte, of Bakers Lane, will have the surgery on 30th December and said finding out about the condition was a big shock.

She said: “I have only found out about this two weeks ago and before that I thought everything was fine.

“I did have back pain so when me and my mum went for the results I was expecting an orthorpedic diagnosis, I never expected this.”

The doctor told her a small fracture in her spine was the least of her worries.

She said; “I had gone to get the result with my mum and when he told me that we just looked at each other and thought if that’s the last of my worries then what have you found.”

Charlotte, a former All Saints School pupil, said the pain varies from day to day.

She said: “I have good and bad days. When the pain is bad it feels as though there is an axe in the back of my head and it just won’t move. But it just makes you appreciate the good days more.”

Surgery is the only option and there is no known cure. She was told to expect shoulder and neck pain to reduce - but a good outcome would be for the head pain to not get worse.

She recently got engaged and had planned a special New Year away - but now she and her family will enjoy celebrations early.

Charlotte said; “We had planned to go to a fancy hotel for New Year but now I will be in intensive care so we had to change our plans.”

The inspiring woman said she was still in shock and the reality had not really sunk in yet.

“I feel like I’m telling a story and I’m not a character in that story. Then I realise I am the main character. It’s overwhelming sometimes.”

But despite the pain, she is determined to help others.

She studies neuroscience as part of her degree at university - and now hopes to help in the research of the disease - with the Ann Conroy Trust. The charity is the only organisation in the UK providing educational material about Syringomyelia and Chiari Malformation. It funds appropriate research work and provides a national helpline and support network which includes qualified support counsellors for those living with the conditions.

“I just want to do what I can to help others. I want to squeeze every bit of positivity out of this as I can.”

Charlotte, who models, had her hair shaved off to help the Little Princess Trust - which provides real-hair wigs to boys and girls across the UK and Ireland that have lost their own hair through cancer treatment.

She said: “When bad things happen you have to look for the positives. Because they are always there, but you might to look that bit harder.”