My name is Jane Sandford and I live in a small rural village called Brough in East Yorkshire on the east coast of England. I am married to John and have a daughter, Jennifer, aged 20 who is studying History at De Montfort University inLeicester. I work full time for one of theUK’s major banks and on the face of it my life looks pretty average.
I was lucky, or at least I feel like I was, I never struggled getting a diagnosis of my AS like most do, in fact it feels like I came upon it quite by chance. Ever since my early twenties I’d had problems with acute back pain with periods where I was quite immobile. I had a road accident aged 18 and it was always assumed it was residual from this. Looking back it was probably this trauma that kicked it all off. I remember walking up to the church in my bridal gown at aged 25 and people telling me to walk properly and stop slouching. Some three years later when I was pregnant I had terrible problems with my neck and shoulder blades and then afterwards it progressed into the lower spine and hips. When Jenny was still quite young I began part-time work at the local hospital working as a medical secretary to a neuro surgeon. One day when I was struggling with back pain he asked me about my problems and recommended a Orthopaedic Consultant. When I saw him a couple of weeks later he seemed to connect straightaway with what it was and referred me for some blood tests, x-rays and MRI. When the results were in he told me I was HLA B27 positive and I had ankylosing spondylitis. At the time I was a young wife with a child and so many priorities in life that it didn’t sink in what it meant. At the time I knew diddly squat about AS and the impact it has and to be fair during that time all it did mean was the occasional bout of acute back pain. During 2004 a toe on the left foot began to gradually swell and turn a shade of deep red/purple. I ignored it for a while but soon it progressed to the entire foot and I was unable to wear a shoe and then eventually weight bear. It was excruciating and I was passed from one specialist to another. My GP at the time insisted it was gout, despite the test being negative. Eventually I got to see another Orthopaedic Surgeon because they thought it was a bone problem and he took one look at it and declared “that’s classic ankylosing spondylitis that is”. And so began the latest flare which lasts to this day …
Being informed about your disease and being able to talk to fellow sufferers is the best form of armour for me. I’ve had to fight tooth and nail to get anti tnf treatment which isn’t given out willy nilly in theUK. I have had to write letters to MP’s, health authorities and consultants which have had a less than friendly tone, get aggressive and question everything. I was commenced on Humira after my MP got involved and this was eventually changed to Enbrel after some difficulties with liver test results. My methotrexate injections pushed my liver enzyme results so high that they accused me of being an alcoholic. After they stopped the methotrexate and my results went down they back tracked at said it was to blame. My knees are so bad now and in particular my left knee has been drained twice and I’ve been hospitalised once because they were so bad I couldn’t walk. Oh yes and my friend who I call “Lil Miss Bitch AS” introduced me to her other friend “Lil Miss Poke You In The Eye Uveitis” – love her, she comes around every year or so.
So that’s me and my life in a nutshell … the lady who shouts at consultants, questions all things diagnosis wise, loves Orthopaedic Surgeons (they are gods), hates rheumatologists and will spout off at any opportunity at any person about AS. My motto is don’t let the bitch get the better of you and live life the best you can.
Brough, East Yorkshire , England