I was told I had growing pains when I was 12 – but the truth was devastating

WHEN doctors told Emily Williams at the age of 12 that the agony in her legs was just growing pains, she and her mum had no reason to doubt them.

But less than a year later, and struggling to walk, Emily, from Cardiff, was diagnosed with crippling juvenile idiopathic arthritis that needed complex spinal surgery. 

As her friends were out having fun, the teenager was thrown into a world she associated with the elderly, that left her depressed, physically exhausted and in constant pain.

Now, Emily, 24, is raising awareness of the condition, which affects one in 1,000 under 16s, and sharing how she turned her life around.

Emily said: “I was happy and healthy growing up, I had a great childhood and rarely went to the doctor.

“But one morning in 2010 I woke up and couldn't move my legs. I was in agony. 

“My mum thought I was pretending to get out of school, but I was serious.

“She carried me to the doctors but they said it was growing pains.

"I had lots of different tests and the results showed nothing wrong.

“I was finally diagnosed with juvenile idiopathic arthritis that has now spread to most of my joints. 

“I didn't think I would make it past 18 as I was so depressed about what my life had become, but now at 24 I’m trying to live my best life despite everything.”

Aged 13, Emily had to give up her two favourite hobbies, horse riding and dancing because she was in so much pain.

However, at first medical tests proved inconclusive. Emily felt as though she had no choice but to “get on with it”.

She said: “I was having to go to school all the time as normal as nothing was showing up on any test.

“Because I wasn't walking very well I was bullied and slowly became a recluse. 

“They would mock and laugh at me, and I ended up feeling really depressed and thinking, ‘Why me?’”

In 2011, after a year of “getting nowhere” with her GP, mum Jayne paid for a private rheumatologist who diagnosed Emily with seronegative juvenile rheumatoid arthritis at just 13. 

The long-term condition causes pain, swelling and stiffness in the joints, and usually affects the hands, feet and wrists.

Emily said: “I remember questioning him saying, ‘I thought arthritis only affects old people?’ I was confused and scared. I had no clue what the diagnosis meant.

“After this I was put on oral steroids as a quick fix and luckily everything started to get better apart from the pain in my neck.”

SO MUCH PAIN

Any sharp movement, such as sneezing or driving over a speed bump, would result in pain in Emily’s neck. She became scared to move due to the intense pain. 

She underwent a scan, which showed an injury caused by the arthritis at the top of her spine which doctors said is usually caused by horse riding or trampolining accidents.

“I was told I needed to have surgery which I thought wouldn’t be too much trouble, but this halo-gravity traction surgery completely changed my life,” she said.

“In October 2011 I had to go on halo traction, a way to pull my head and spine up carefully, so I had four metal pins attached to my head with a metal halo around it and 20lbs attached to it in hopes of fixing my injury.

“I had to lie on my back for five weeks and have round-the-clock care. 

“The nurses had to turn me over every few hours to prevent bed sores, and they had to wash me. My toilet was a bedpan. I was so embarrassed.

“I didn't have any time to process my emotions. I spent most of my days watching movies.

“Having visitors helped pass the time and while I was so thankful for everyone who came to see me, I hid how I was really feeling inside.”

However, when the device was removed, Emily was given the bad news - the halo traction hadn’t worked and the injury in her neck remained.

She had to undergo another surgery, to have a metal screw inserted in her neck to fuse the bones - luckily this surgery was successful.