Ankylosing spondylitis: Cardiff woman's condition that feels like 'being hit by lightning' every day

Kate Liberty was diagnosed with ankylosing spondylitis when she was 18 years old. Credit: Media Wales

A woman who was diagnosed with a rare form of arthritis as a teenager has recalled how she felt like she's been "struck by lightning".

Kate Liberty was in Year 13 studying for her A-Levels when she started experiencing "lightning-like" pains which began in her lower back and shot down her legs. 

Despite initially brushing them off as nothing serious, she decided to see a doctor when they began occurring every single day.A series of blood tests at her GP surgery revealed that she had raised inflammation levels and the decision was made to refer her for exploratory scans at the Royal Glamorgan Hospital.

Kate is taking part in the 'Walk Your AS Off' Challenge to help raise money for the National Axial Spondyloarthritis Society (NASS). Credit: Media Wales

Then, at the age of eighteen, Kate was given the devastating news that she had a rare condition known as ankylosing spondylitis, a form of arthritis which leads to the spine fusing together.Kate, now 24, said: "It was initially quite a shock, but I was lucky to be diagnosed within six months of experiencing symptoms. I know it can take many years for some people to receive their diagnosis.

"I had been going through an extremely tough time with my home life and studying for my A-Levels, and the diagnosis was another added stress. At first, I felt very alone and my family and friends didn't understand what I was going through."She explained ankylosing spondylitis is a progressive condition and is likely to see her mobility deteriorate over time. 

When she has so-called "pain days" she needs help with everyday tasks like getting dressed or putting on her shoes.Kate said: "I get a lot of my pain at night when I'm trying to sleep. About three or four hours into my sleep I have to get up or try and sleep sitting up because my upper back aches a lot when I lie on it for too long.

"I find that wearing comfortable shoes with lots of support helps me throughout the day. I find I get the shooting pain when I'm going from in a seated position to standing up. 

"When I'm having a really bad day I do have to rely on my husband for many things - and I do feel like I lose my independence."After being diagnosed with ankylosing spondylitis in May 2016, Kate said it took a while to accept that she had the disease, particularly as she had her mind on her upcoming exams. She also had some family issues at home which she said were "well beyond my control".Kate said: "Being diagnosed at 18 was also difficult because that's when all my friends started going to all the bars and nightclubs in Cardiff. 

"But I just felt really uncomfortable going out because I just knew that I'd be in pain and I wouldn't enjoy it. I felt like I lost out on a lot of memories with my friends before they all went off to university."Over time, Kate says her condition is likely to cause her more pain. She added that some of the bones in her lower vertebrae will start to fuse and form new bones which could affect her mobility.

Kate said: "But I'm really lucky that I live in a time where there are lots of new medical treatments available for people like me.

"I started off with just paracetamol and ibuprofen, but after a while I had to be put on the stronger painkiller naproxen which I've been on for about five years."I'm now looking to start on what are known as biologic therapies or biologic treatments. 

"There's one called Humira which is a disease-modifying drug that I'd have to inject one or twice a fortnight. It apparently stops the inflammation from getting any worse, so it could be life-changing for me."She added that as the illness is invisible, there is stigma attached to it. 

Kate said: "For instance, if I was at on a train from Pontyclun to Cardiff I'd be embarrassed to ask for a seat from someone. 

"People often wonder how I can have arthritis when I'm so young. I didn't really get a lot of support from anyone in school, it just came from my really close friends, my mum, my auntie and my then boyfriend who has now become my husband."After Kate was diagnosed she discovered that her grandfather, who had died when she was only four years old, had also lived with ankylosing spondylitis for much of his life.Kate said: "One of my earliest memories was of him being in a wheelchair, and he was blind. But when you're young, you don't really ask questions like: 'What's wrong with grandad?' 

"It was quite a shock when I found out that he had ankylosing spondylitis too. I wish I could have been around him more."

What is ankylosing spondylitis?

Ankylosing spondylitis (AS) is a long-term condition in which the spine and other areas of the body become inflamed, according to the NHS.

AS tends to first develop in teenagers and young adults. It's also around two times more common in men than in women.

Symptoms include:

  • back pain and stiffness

  • pain and swelling in other parts of the body – caused by inflammation of the joints (arthritis) and inflammation where a tendon joins a bone (enthesitis)

  • extreme tiredness (fatigue)

For several years Kate had check-ups for her condition every six months, but that all came to a grinding halt when Covid-19 hit in March 2020. 

However, she said an eight-week rehabilitation programme at the Royal Glamorgan Hospital before the pandemic hit gave her the tools to manage her pains more effectively.Kate said: "We did lots stretches and exercises that were safe for me to do without hurting myself because with ankylosing spondylitis doing exercises doesn't always help. 

"So overall I have had a good experience with the NHS, but I just haven't had that clinic appointment which I normally have every six months. I haven't had one in a very long time."In addition to her ankylosing spondylitis, Kate also found out in April that she has Crohn's disease, a common complication from ankylosing spondylitis as both are auto-immune disorders. 

'I want to give back'

Despite her chronic ill health, Kate has decided to take part in the Walk Your AS Off Challenge to help raise money for the National Axial Spondyloarthritis Society (NASS). 

While she hasn't set a specific goal, her aim is to walk 10,000 steps each day in May.

Kate concluded: "I want to give back to this fantastic charity that has offered me so much advice over the last six years and be able to help fund other people who are perhaps newly-diagnosed and need that support.

"I really want to raise awareness for the disease because I hadn't heard of it before it was diagnosed, and pretty much everyone I've spoken to has never heard of it either."Kate, who is now doing a part-time history degree with the Open University from home, said she has hopes of becoming a history teacher. 

She also has an Instagram account which has helped her connect with other people with similar conditions.