Kate Liberty, 24, from Llantrisant, tells how she suffered from “lightning-like” pain as a teenager, which turned out to be a rare condition that caused her spine to fuse
(Image: Kate Liberty/Media Wales)
A woman has shared how she experienced “flashes of lightning” pain in her legs and was shocked to learn her spine was collapsing due to a rare condition.
Kate Liberty, 24, from Llantrisant, was visiting her doctor as the pain hit every day and after it was discovered she had elevated levels of inflammation she went for scans at the Royal Glamorgan Hospital.
It was then that she received word that she had a form of arthritis called ankylosing spondylitis, she said Wales Online.
“It was quite a shock at first, but I was fortunate to be diagnosed within six months of the onset of symptoms. I know that for some people it can take many years to get their diagnosis,” she said.
“I had been going through an extremely tough time with my personal life and high school, 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.”
Kate Liberty/Media Wales)
Kate says ankylosing spondylitis is a progressive condition and her mobility will likely decrease over time.
On so-called “pain days” she needs help with everyday tasks.
“I have a lot of pain at night when I try to sleep. About three or four hours into my sleep I have to get up or try to sleep sitting up because my upper back hurts a lot when I lie on it. I find wearing comfortable shoes with plenty of support throughout the day helps,” explained you.
“I get sharp pains when I go from a sitting position to standing. When I’m having a really bad day, I have to rely on my husband for a lot of things — and I feel like I’m losing my independence.”
Kate, who was diagnosed with ankylosing spondylitis in May 2016, said it took her a while to accept that she had the condition.
“It was also difficult to diagnose at 18 because that’s when all my friends started going to all the bars and nightclubs in Cardiff. But I just felt very uncomfortable going out because I just knew I would be in pain and I wouldn’t enjoy it. I felt like I lost a lot of memories of my friends before they all went to university ” she admitted.
As time went on, Kate said her condition was likely to cause her more pain. She added that some of the bones in her lower vertebrae will fuse and form new bones, which could affect her mobility.
“But I’m really lucky that I live in a time where there are a lot of new medical treatments for people like me,” she added. “I started out on just acetaminophen and ibuprofen, but after a while I had to be switched to the stronger pain reliever naproxen, which I’ve been on for about five years.
“I want to start now with what are called biological therapies or biological treatments. There’s one called Humira, which is a disease-modifying drug that I would have to inject once or twice every two weeks. It apparently stops the inflammation from getting worse, so it could be life-changing for me.”
Kate Liberty/Media Wales)
She added that since the disease is invisible, it carries a stigma.
“If I were on a train from Pontyclun to Cardiff, for example, I would be embarrassed to ask anyone for a seat,” she said.
“People often wonder how I can have arthritis when I’m so young. I didn’t really get a lot of support from anyone at school, it just came from my really close friends, my mother, my aunt and my then boyfriend who is now my husband.”
After Kate received the diagnosis, she discovered that her grandfather, who died when she was only four years old, had also spent much of his life with ankylosing spondylitis.
“One of my earliest memories was of him being in a wheelchair and blind. But when you’re young you don’t really ask questions like ‘What’s wrong with grandpa?’ It was quite a shock when I found out that he also had ankylosing spondylitis. I wish I could have been with him more.”
In addition to her ankylosing spondylitis, Kate also found out in April that she has Crohn’s disease, a common complication of this condition as both are autoimmune diseases.
Despite her chronic illness, she decided to take part in the Walk your AS Off Challenge to raise money for the National Axial Spondyloarthritis Society (NASS). While she hasn’t set a specific goal, her goal is to walk 10,000 steps every day in May. To visit the fundraiser, click here.
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