The Faces Of Ankylosing Spondylitis

Hi everybody my name is Jean Mace and I’am 48 years old I was born with Hip Dysplasia which wasn’t diagnosed until I was 23 years old we knew something was wrong because as a child if I walked to far stood up too long I would faint and have blackouts . My mum took me to many doctors and hospital when I was 2 she said there’s something  wrong as I didn’t learn to walk until I was two and a half and couldn’t stand for long cried with pain  .Allstorts of test brain scans where done I was put on medication my mum never gave in she knew something wasn’t right but I was born in 1964 in UK and doctors where gods what they said is law and you never questioned them .I grew up went to work in a in a shoe factory which I loved I became the youngest union representative at the age of 21years old .My health was still not good still fainting and falling my hands would cease up . At the age of 23 had to go to hospital as my hips where really bad I had to have a Periacetabular Osteotomy which wasn’t that successful. At the age of 25  I had to give up work the pain was just too much .I went back to the hospital had another MRI Scan and found my back was really bad I had Degenrative Disc Disease and Prolapse Discs as well as my problems with my Hip Dislocation .We where told I would be in a wheelchair before I reached 30.I was put on crutches and pain medication sent to physiotherapy again but soon had to stop as hips would just keep coming out and would spend most of the time having them put back .So spent the last 20 odd years on crutches and in a wheelchair when things got really bad after being told there was nothing that could be done. My mum was told she had IBS when I was 30 and she had pains in the neck and lower back but she fell down some stone stairs in her 20s so no one thought  anything of it two years later mum was diagnosed with Terminal Colon Cancer. Within three months  we had lost her to the cancer it had spread to her spine that was the first time we heard the word Ankylosing Spondylitis and fusing but with everything else it just got forgot about cancer and making my mums last weeks the best we could that was the only thing that matter that was 15 years ago.Last year my hips came out 4 times in one week so Gp said that it was time to go back to specialist  . My dad took me while the specialist was going though my medical records reading them out loud and he said of course you know you have Ankylosing Spondylitis we just looked at each other and said no thats what my mum had but no one had told me thats what I had as well of IBS and my spine problems and pelvis and hips .So now getting up to date just be in hospital to have polyps and swellings biopsy on bought back memories of my mum and younger sister she as just been given 5 years alclear but pleased to say mine was only Adenomatous Polyps and Pre-Malignat which where succesfully removed and they are going to keep a eye on me.Another MRI Scan done fusing in lower back, pelvis and partial fusing of neck prolapsed disc in spine. Saw the specialist wednesday and he wants me to have reconstrutive opertation of the neck C7 C6 C5 Partial fused and  Prolapsed Discs in nearly all the other discs in the neck he said if only I had been diagnosed earlier I wouldn’t be in such a state .So now trying to find out what this means and what I can expect the recovery will be before saying yes to the operation .

The one good thing thats as come out of all this is the amazing people I have meet and the compassion I have seen and felt that you have all shown for each other and me and for that I will always be grateful to my A.S Family

THANK YOU : ) xXx

England United Kingdom

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