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Stirling teen is one of just 20 people worldwide with rare condition

Alex Arkell was just days away from death when she was diagnosed with an ultra-rare brain tumour. She tells The Courier how staying positive has helped with her recovery after major surgery.

Alex is feeling positive after her diagnosis. Image: Supplied
Alex is feeling positive after her diagnosis. Image: Supplied

A Stirling teenager was filmed singing and dancing just hours after brain surgery as she adjusts to life with an ultra-rare tumour.

Alex Arkell, 19, is one of just 20 people in the world to be diagnosed with a follicle-stimulating hormone (FSH) secreting adenoma – a type of benign brain tumour.

Doctors told the retail worker she was days from death when diagnosed in 2022.

Alex during treatment. Image: Supplied

She went on to struggle with PTSD and panic attacks as she underwent three surgeries and proton beam therapy to try to stop the tumour from growing.

However, the former Bannockburn High School pupil says she is now the “mentally strongest” she has ever been and was filmed singing the Bee Gee’s Stayin’ Alive after her third surgery this year.

Stirling teen Alex sings Stayin’ Alive after third brain surgery

She told The Courier: “When they told me my tumour had grown again I never thought I would hear those words again.

“I thought after the proton beam therapy that was it and I would just have to live with taking my medications.

“I was in shock and was looking at my family so upset again.

“From that day, I changed my mindset. I was so ready for the surgery and I was telling myself I was going to be great.

“I came out of the surgery, and five hours later, I asked my mum to film a TikTok video of me singing and dancing to Stayin’ Alive by the Bee Gees.

“I was standing on the bed and completely out of it on the drugs they give you.

“I was just thinking, ‘I am going to be fine’.

“It just shows the power of your mindset and my recovery this time has been great, the surgery all went well.”

Alex, who was just 16 at the time of her diagnosis, had experienced severe bloating which she put down to food intolerances.

However, an ultrasound scan revealed that her ovaries had expanded to 13cm, while she had also lost peripheral vision in her left eye due to the tumour.

‘I think because you are so scared of the unknown you just don’t know how to feel when something like that happens’

She is now studying counselling and psychology through Open University after being inspired by her experience.

Alex said: “I think because you are so scared of the unknown you just don’t know how to feel when something like that happens.

“You hear about it happening but never think it will be you.

“It is also an age thing, I have matured and I understand it better now.

“I went back to work last week on reduced hours, I am trying to get back to normality and a routine.

Alex had proton beam therapy. Image: Supplied

“It is now a waiting game to see what happens with my health next, that is unanswerable because it is so rare.

“I am also one of the youngest people to be diagnosed with this so they don’t know what will happen, it is a life-long condition.

“Radiotherapy took away my pituitary glands so I don’t have hormones and have to take steroid supplements for the rest of my life.

“If I don’t take them I could die.

“I have been supported so much by the Pituitary Foundation and would like to be an ambassador for them one day.”

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