Ankylosing spondylitis doesn’t just affect the person with the condition. It can affect the whole family. This is one couple’s story of how they have coped with AS. On 1 October, Lucie is taking on the Cardiff Half Marathon to raise money for NASS and awareness of AS.
My AS symptoms began at the age of 17 with slight aches and pains. It wasn’t until I was 18 and had a huge flare while I was on holiday that I realised it was more than just a bad back. To this day this was the worst flare up I have ever had. For a week I was bedbound and in a wheelchair, completely unable to walk.
On my return, I went to the local GP and he suggested it could be AS. I tested positive for the HLA B27 gene and an MRI scan confirmed my diagnosis.
The pain increased rapidly every day and I found it challenging. Some days were certainly worse than others. I had sleepless nights, morning aches and just constant severe pain some days.
After being diagnosed and seeing various different specialists, I was prescribed a number of different pain relief medications. They eased the pain slightly but did not make the pain bearable. The next step was Enbrel. The results from this have been life changing. All the aches and pains in my back are gone and I no longer have stiffness and difficulty walking.
I’m very grateful for all the help, support and reassurance I’ve received from loved ones, NHS specialists and from the NASS charity.
I don’t have AS but that doesn’t mean it doesn’t affect my life.
In February 2016 I met Jordan and we started dating. As I got to know Jordan better, I was also able to understand AS and how much it can affect someone’s life.
I learned how every day was a struggle, some days were better than others and some days were worse, but every day presented him with a different challenge to overcome. Even taking all the prescribed medication didn’t completely get rid of the aches and pains which affected different areas of Jordan’s body. Not just his back, but his neck, eyes, legs and hips would be in pain as well as causing sleepless nights and extreme fatigue.
Despite all the things he has gone through, he is always so positive and strong. Even on the bad days Jordan always pushes himself and never lets it hold him back.
He never complains about anything, we go for long walks over the Gower, we go camping whenever we can and we go out dancing because we both love to do these things. Even though Jordan can be in so much pain afterwards, his AS has never ever stopped him from doing anything and I’ve never looked up to and admired anyone as much as I admire him.
Watching someone you love suffer so much when there’s nothing you can do hurts so much it’s almost physically painfully itself.
Enbrel has literally changed Jordan’s life and it’s so amazing to see him no longer suffer.
This is why I want to raise money and awareness for AS, so that research into the causes, cures and the treatment of it can carry on and can hopefully change and improve more lives just as fantastically and dramatically as it did to Jordan’s.