The singer who had rheumatoid arthritis at 14, but suffered constant pain for decades until she was given proper diagnosis
Eve Williams, a songwriter from Bangor, developed the condition when she was in her teens but endured years of agony until a private hospital in Bath offered her hope. She tells Una Brankin how she's now building a music career.
Like many slouching teenagers, Eve Williams was used to hearing that she had bad posture and had to straighten up. The problem was, she simply could not.
The singer-songwriter from Bangor developed rheumatoid arthritis at 14, but wasn't diagnosed until 23.
"My Doctors just didn't expect to see it in someone so young," she recalls. "They put my problem down to bad posture. Arthritis is a term associated with old age and wear and tear - it's when the immune system attacks healthy tissue in the joints.
"But it can happen at any age. In my case, it was causing the vertebrae to seize in my neck, which made it very difficult to move my head from side to side. If you tell people you have arthritis, they don't realise it's serious. Mine is a lot more serious than people assume."
Now 39, Eve lives with her mother, Isabel (75), a former social worker, on Bangor's seafront. Her late father Fred Williams, also a former social worker, suffered an acquired brain injury after being hit by a drunk-driver in 2005, and was later awarded an MBE for his services to people with disabilities, under the Jigsaw NI charity, which he founded.
As a child, Eve's underlying condition was further complicated by Type 1 diabetes.
"I'd fall asleep a lot and have no energy and I had to take insulin every day," she recalls. "I just got used to it and took it for granted. But then I started to get this severe pain in my neck - I thought it was from a new bed I'd got, and that I must have been sleeping in a bad position.
"My ankles became painful and swollen too, as if I'd sprained them. As a teen, I just accepted what I was told, but when I reached my early 20s, I knew something was wrong and I had been misdiagnosed."
At the time, Eve was studying English Literature at Queen's University, Belfast. Despite her ill-health, she went on to achieve a Master's degree in Old English.
"My 20s were the hardest - I had very little energy and couldn't be spontaneous. I had to plan ahead all the time. There was no real student partying for me. If I did, I'd really pay for it afterwards. With the diabetes, I couldn't really drink anyway."
After graduating, Eve worked as a development officer for Jigsaw until her condition deteriorated. After several tests, at 23 she was initially diagnosed with Ankylosing Spondylitis (AS) a form of inflammatory arthritis. Its symptoms are centred around pain and inflammation in the joints of the lower back.
"My GP said he'd never seen someone go downhill as quickly. I was in my 30s by then and couldn't do my job. I was also teaching music on the side, when I could, but I had no money to pay for any further studies in music. It was a horrible time."
Eve's condition meant that she had restricted movement and had to pre-plan carefully even the shortest journeys from her armchair to the bathroom.
By 2011, with her symptoms worsening, she was forced to go to the Bath National Hospital for private treatment, as she had run out of options back home.
Then, aged 33, she was given a fuller diagnosis: "At that point I had almost completely lost my mobility," she recalls. "In Bath, I was told I had a severe form of refractory rheumatoid arthritis. Having that proper diagnosis made a huge difference - I was put on an amazing biologic super-drug which stops the immune system attacking the joints.
"The problem is, it leaves you open to infection and I contracted pneumonia, which was deeply unpleasant. I ended up on a crash trolley." Thankfully Eve recovered and began responding well to treatment. She stayed in a small holiday cottage and enrolled in a Masters of Music in songwriting course at Bath Spa University.
"Bath's a beautiful world heritage city and I was so lucky that I found the course I wanted to do there, while having my treatment. It changed my life completely," she says.
"Before, my ankles and knees were so swollen with fluid, I couldn't walk. Everyday tasks, such as cooking, were very difficult and I was in constant pain. I was so woozy on my medication, I couldn't drive.
"My skin dried out and my hair got brittle and fell out. My digestion was badly affected, too. At one point, I didn't know how I was going to survive." As a Centre of Excellence in the treatment of rheumatoid arthritis, Bath National Hospital was able to assign a specialist team, including a dietician, to Eve's care.
"They were so amazing, it made me angry to think of how I was dismissed for all those years. I didn't have the maturity then, to deal with that very well. It was very frustrating. I was even misdiagnosed with a kidney infection at one stage, and fell into a diabetic coma.
"And when you're told 'you have bad posture', you believe it. It was put down to the way I was carrying my schoolbag - they said it was badly affecting my neck. It was a very simplistic analysis.
"An inexpensive blood test would have picked up on the inflammation immediately, but I wasn't offered one. Some of the drugs I have been on will also have affected my fertility - and I would like kids. For now, I'm an auntie to my younger sister Paula's two kids. She's a playwright, and very musical, too."
When Eve returned home from Bath, she had her Master's degree in music under her belt.
Since then, she has been named One to Watch twice by Nashville Songwriters' Association International (NSAI), and had recorded with Andrew Giddings of Jethro Tull. Her music has achieved airplay in six countries and she's about to embark on a UK tour this summer.
"That would have been impossible without the treatment which I begun in Bath, which I now receive at the Ulster Hospital.
"It was very heartening for me to get support from the NSAI. A lot of my songwriting is written about things getting better, from coming out of dark places
"I've been given a new lease of life and I hope my story is inspiring to others."
- For Eve's tour dates and Nashville-acclaimed tracks, see www.evewilliamsmusic.com / https://soundcloud.com/evewilliams/illumination-acoustic
Unpredictable disease which turns the body’s natural defence mechanism against itself
Rheumatoid arthritis (RA) is a challenging, complicated and unpredictable disease. It is a condition that makes the joints in your body become inflamed.
It is the second most common form of arthritis. Between one and three people in every 100 develop rheumatoid arthritis, and it can start at any age. Most of these people, around three-quarters, are women. Although you are more likely to develop rheumatoid arthritis in your middle years — between the ages of 30 and 50 — children, young adults and older people can also get it.
With rheumatoid arthritis, your immune system attacks your joints — and sometimes other parts of your body — for no reason. The attack can go on for a long time, or come and go. The good news is there is plenty that can be done to help control RA and make it more manageable.
Many different professionals will work together to help you manage your arthritis, but they are all aiming for the same goals: to reduce inflammation and slow down, or even stop, any damage to your joints, to relieve your symptoms — like pain, fatigue and stiffness — and to help you get on with your life as well as possible.
RA is the most common inflammatory form of the types of arthritis. In most diseases, inflammation serves a purpose — it helps healing and, when healing is done, the inflammation goes away. In RA the opposite occurs.
The RA inflammation causes damage — it can go on for a long time, or it can come and go. When it is active — known as a flare-up — you may feel unwell.
The body’s natural defence (the immune system) are part of the problem in RA. It somehow puts itself into reverse and attacks certain parts of the body instead of protecting it.
This auto-immune reaction occurs mainly in the joints, but in a flare-up other organs can be affected. It is not known what causes the immune system to react in this way.
Ankylosing Spondylitis (AS) is another form of inflammatory arthritis.
Its symptoms are centred around pain and inflammation in the joints of the lower back. ‘Ankylosing’ means stiffening; ‘spondylitis’ means inflammation of the spine. If left untreated the joints of the spine may become fused (bridged by bone) and lose their movement.
For further information go to www.arthritisresearchuk.org/arthritis.../rheumatoid-arthritis