The Faces Of Ankylosing Spondylitis

My Name is laura and im 41 next month. I am a wife, a mother, a daughter,a sister and a good friend to many:
Ive probably had AS since i was 11 as i was referred and re:refered time and again to orthopaedics with terrible growing pains.

At 18 years old i was diagnosed with crohns disease after i nearly died losing over 2.5 stone in less than 2 weeks, the precursor to this was huge amount of albumin in my urine, they now know that this happens prior to any inflammatory response/disease especailly like crohns.

I was 21 when my bowel perforated in 1992 and i was rushed by a very stupid boyfriend to a hospital whilst i gave direction semi conscious. However i refused to go to theatre at this time because it was widely believe by the medical fraternity that if you opened a crohns patient it spread..I lay in ICU for 2 weeks.
Years went by and i got on with treatments and horrific examination after demeaning horrific examination; all this time the leg and pelvis pain simmering away in the background.

1994 sees me start my Bachelors of Sciences Honours degree at Glasgow University it will come as no shock to those that know me that my main interests were immunology and anatomy, here I built a fantastic and life long friendships with academics that would in turn one day save my life. It was during one of these immunology lectures in about 1996 that i first came across the disease Ankylosing Spondylitis and i knew without the shadow of a doubt then that that was indeed what i had; and encouraged by my colleague I spoke to and made my initial contact with a immunologist called Professor Roger Sturrock. We talked in depth and he again encourage me to speak to my consultants at the time and indeed when I spoke to my Gastroenterologist at the time about the level of pain i had on waking and walking, standing etc i was rushed for standard xrays, unfortunately these were unremarkable. I then spoke to a Genetics lecturer at Uni who was always very interested in my case we wanted to type my human leukocyte antigen HLA, but these test were not common back in the early 90s and it would have looked suspicious on the lab audits so i put it to the back of my mind and got on with my studies this was in early 97, by summer 97 my liver started to show signs of failure and i was in agony and hospital. My own GP even struggled to come to terms that this could be happening and that there was no way back or hope of a transplant.

I continued this pattern for a couple of years and fought threw a mire of drugs to get to my graduation ceremony on 27 July 1998, i graduated with Hons in Parasitology and Forensic Medicine. It was all i had ever wanted to do, it was something i had to achieve for me, and no one else.

The millennium see me single and about to turn 30 and living in my own house and enjoying my new found freedom, this is when i entered into Health Promotion a job I just adored I worked with specialist “Hard Line” cases of cardiac rehab, at first office based I soon moved onto my first love of clinical care and hospital case critical care patients,

I got so much from this job and i loved my patients to a fault, but it got harder and harder for me to walk around the hospital and wards.And i was soon pensioned out by our very caring National Health Service who couldnt cope with a disabled member of staff.

In early 2004 the pain i was experiencing was excruciating and whilst talking to my GP i asked him to refer me to genetic for HLA typing he asked me why, when i told him i was 100% i had Ankylosing Spondylitis he said “it cant be that, is that how bad the pain is?” i told him “you better hope it is, because if its not i have a sarcoma in the base of my spine.” He ran the test. summer 2004 just before I married im diagnosed HLA-B27+ and re:referred yet again to a Rheumatologist, hoping this time for positive action and a game plan, only to be told what i need was a good chiropractor and a masseuse and to go and live my life. I cant describe my utter disgust and hatred i felt towards a man of medicine at this time. That weekend trying to understand what went on and getting no where looking on the internet for a rheumatologist, I decided to look through the university lecturers and see what departments had what funding and from whom…And their he was Prof Roger Sturrock head of Centre of Rheumatic Diseases with funding from the medical research council UK into Ankylosing Spondylitis, it is now that i take my biggest and most unprofessional risk but my life depended on it, i emailed him direct, it is only after you hit the send button that you realise just what trouble you could be in..(its the beginning of november 2004)

Next morning im in my office its 830 and the phone rings and there is this wonderful compassionate voice, it my Proffsor from Uni, he wants to see me as soon as possible, he gives me his secretarys direct line number to set up an appointment. Little did i appreciate at this time you can wait a year to see this mans contemporaries, Im given an appointment for the 18 January 2005.

The 18 January 2005, was a very white one, very deep snow has covered Scotland and transport is at a standstill, but determined I make my way slowly to Glasgow and find an empty waiting room, and I spend the entire morning with Prof Sturrock who runs bloods,xrays,scans and full exam, he turns to me almost 10 years after we have first met the man whom taught me all those years ago, and says “You know what this is, and what it means dont you” there could not have been more compassion, “We both knew back in 96″. “Yes we did” and so i was diagnosed on that very cold winters morning, but it was the biggest relief of my life suddenly all the illnesses made sense everything fell into place, and i actually felt free.
We then went onto discover just how autoimmune i was, I also had Hashimotos Thyroiditis. Sjogrens, Renaulds syndrome, iritis..The Ankylosing Spondylitis is found to be through my full skeleton, fused left SI, 3 fused Thoracic vertebrae from toes to my ears its there, i have it in the little bones in my ears too and as they start to fuse the inevitable will happen.
Summer 2005 brings great news because of the close eye the consultants keep on me i successfully fall pregnant within one month of them trialling me on low doses of thyroxine. My pregnancy was fantastic because prenatal hormones have to dampen down your immune response to allow you to carry a foetus it has the magic ability of damping down the AS. I delivered my 10:10 baby boy by C=section in February 2006. Looking after a baby when your immune system goes back into attack mode isnt easy, and when the baby is 6mths old my thyroid completely fails and i go into a thyroid crisis.
Winter 2007 and things of course have progressively got worse as my immune system continue its onslaught and I go through the preliminaries for Humira having been allowed to choose my own biological,I decided this one fitted with my life style best and was most promising with crohns also. Just as my specialist nurse is preparing the prescription she speaks to prof Sturrock and to this day she isnt sure what it is, but there is something about my eyes she isnt sure about and they decided would it be ok of i went for a neuro consult first. Again I am seen very quickly by another acquaintance of the professors, when he tests the reflexes on either side of my body they are totally different. I know even at this stage exactly what this might mean, and im referred now to neurosurgery for an urgent MRI. So Easter 2008 and i am diagnosed with a benign brain tumour…There is nothing in this world that can ever prepare you for this diagnosis, it is the very conversation you have dreaded all your life. They cant biopsy it as it is too dangerous, and they will only operate when they really need to. I was told by my neurosurgeon ” I can give you no Guarantees, and I probably will never be able to do so.” At this point all i want to do is live. Back home biologicals are the last thing on my mind i just want to be with my own wee family, and thats really how its been “Fready” gets his photos taken every year so they can keep an eye on his measurements and to make-sure he hasnt decided that he would like a blood supply which he could do in time an become malignant. Between appointments and MRIs i really dont think of it anymore you just cant and be sane.

when i was diagnosed at that time i have a Kephsosis where the fusion is on my thoracic spine and a double scoliosis in my lumber spine.. My spine is about a hand space away from my right shoulder blade and about a 2 fingers away  from my left shoulder blade..fusion left si, lower lumber, 3 thoracic vertebrae, ribs are fused and that im down to less than 1cm chest expansion. and take terrible chostochondritis.. I have severe plantar facititus and synovial tendonitis in my kness which are both wreaked.like i said ive also got it in my ears and my ear canals used to close over twice a year where i would be hospitalized and given IV antibiotics for over 2 wks at one point they had to treat me for meningitis as a precaution this is directly linked to the AS and the professor that treats me has many papers out on it now(if you can use that). It is also in my Jaw.

I cant lay on my back and i havent ever sat on a floor in years, when i was in for my operations they had to build up the beds to accommodate the forward curvature that is in my spine it is very noticeable!  a bit like that guy in kellys pictures actually!

So no biologicals for me because they could drastically change lifes outcome for me, I have AS it isnt controlled well but id rather have that than the biologicals changing the outcome of the brain tumour, its just a no go.

2010 I was diagnosed with grade 4 endometrosis which is very serious and i have been put through a chemical menopause and should be on analogue therapy until such times as nature takes its course, it is so wide spread there is no point in a hysterectomy as you really have to turn the hormone trigger in the brain off.
This year i had more endometrosis surgery and my gallblader out.

You may wonder why i havent just stuck to the AS but for me its just not as clean cut as that i have so much playing into the pain cycle the combination of all of the above is horrific albeit it is the AS that has left me fully disabled, I cant walk 50m, I cant bend to reach anything on the floor or below knee level, i wake with full body rigor in the mornings so much so i dread going to sleep at night, i have an electric bed to sit me up in the mornings whilst i scream, it wasnt fair for my husband thinking he was causing the pain,whilst trying to lift me. I have an electric toilet try crossing AS and a fused spine with Crohns and what do you get. I use a wheel chair and a stick. I take over 18 drugs a day including Chemo for the AS and still the pain cant be kept under control.

I am Laura, I am a wife, a mother, a daughter and a sister and a good friend to many; I am me and i am a survivor. please dont forget who i was prior to all this for that i am still.

I dont know what the future holds for me it is here and now, plans are not made and dreams are not fulfilled. And yet there is so much life for me to live.

The Highlands Of Scotland