A.S. Face 2065: Renee Crisp

A.S. Face 2065: Renee Crisp



My name is Renee Crisp. I’m from Australia. I was diagnosed just under a year ago. I am now on simponi which was a miracle drug at the beginning but unfortunately was appeared to have worn off. It’s funny, two years ago, I had never heard of ankolysing spondylitis but I have now met three people in person in the last two months that have it as well. I find great comfort in the many AS facebook support groups. I have learned so much about this disease from all of those brave warriors.

A.S. Face 1935: Julia New

A.S. Face 1935: Julia New


My name is Julia New, I’m from the East coast of Australia, and I was diagnosed a year and a half ago, after being misdiagnosed for well over a decade. I’ve had to leave careers, I’ve been forced to ask for help from family and friends to help with my children, and even now I struggle on a day to day basis with pain management as we haven’t yet found a solution that works for me. AS is frustrating because you still look healthy and capable and yet all my bones are screaming. People who don’t know my situation think I’ve hurt myself or they think I’m putting it on. I constantly hear people say “you’re too young to have pain like this”. The hardest part is when doctors don’t believe that your pain is real, and unfortunately that happens far too often.

A.S. Face 1813: Anita

A.S. Face 1813: Anita




‘My name is Anita, I live in Sydney Australia. I’m in my 30’s. I’ve coped bravely with AS symptoms for many years but things are getting more challenging nowadays. I’m thankful for all the good in my life especially my beautiful children and the love of family and friends.’

New South Wales, Australia

A.S. Face 1794: Sandy

A.S. Face 1794: Sandy

I live in Sydney Australia

I have lived with AS for around 21years been on all sorts of medication. The only way for me to function and be pain free is on biologics- I guess I am one of the lucky ones it works for. I am so grateful it works but always have an internal battle in my head as would love to be in remission and free of all medication.

I work in the allied health industry and do my best to live a healthy life with regular exercise and a healthy diet

I feel my family and a lot of my friends can’t really relate to what I go through with this disease. It’s great to meet others in the same circumstances as I don’t feel as alone living with this chronic condition.

New South Wales, Australia

A.S. Face 1784: Marcus

A.S. Face 1784: Marcus




My name is Marcus i’m 44 & from Sydney Australia

Pain started in lower back at age 16, Diagnosed 7 years later at age 23

Went the medical route then the alternate route for many years with no

success, eventually keeping it under control with diet & exercise & the

occasional anti inflammatory, until 4 yrs ago when my hips fused & couldn’t

walk or do anything anymore, had give up working & go on disability. Had

my hips replaced last year & now after 6 months of rehap i can now walk again.

New South Wales, Australia

A.S. Face 1777: Brooke Oakley

A.S. Face 1777: Brooke Oakley



Hello, my name is Brooke Oakley and I am 43 years old. I live in N.S.W. Australia and have been diagnosed with Rheumatoid Arthritis along with Ankylosing Spondylitis.

New South Wales, Australia

A.S. Face 1748: K.G.

A.S. Face 1748: K.G.

South Wales, Australia 

A.S. Face 1581: Jessica

A.S. Face 1581: Jessica

A.S. Face 1383: Kate

A.S. Face 1383: Kate

My name is Kate, I am 34 and I am the “face” of Ankylosing Sponsylitis.

I had gestational diabetes at 26, which morphed into type 2 diabetes straight after giving birth, even though I was slim, young and healthy. This later ‘morphed’ into Type 1 diabetes at 32. I also have a pituitary gland tumor which causes hormonal imbalances.

After years of mystery illnesses and pain, and after 19 hospital admissions, sometimes for up to 6 weeks at a time. All it took was an xray of my sacral joints to diagnose me with AS. I had major inflammation and a lot of damage. I was also diagnosed with psoriatic arthritis, as I also suffer from psoriasis.

Upon discharge, the Rheumatologist handed me a written note with the words “ankylosing spondylitis” and “psoriatic arthritis”. I was told to ‘google them’ and see the clinic in 6 weeks to begin treatment, Humira. That was it…….after all that, I got a hand written note. No explanation, nothing.

So my partner and I did just that, googles it. To our horror, we found that Humira is not a good idea for diabetics, especially is you are considered a “brittle” diabetic, which I am. This left us confused, infuriated and concerned at the level of care taken. We wanted a second opinion before treatment was to begin.

So off to Sydney we went. We saw a Rheumatologist who specialised in AS. He agreed with the diagnosis but also noted there are other treatment options.

At the clinic back home, we voiced our concerns regarding  the Humira and was put on Enbrel. This seemed to work well.

About 7 weeks into treatment, my left hip basically locked up. I was sent to the ER screaming in pain. I was the rhemo team and they admitted me immediately. After weeks of testing, they came to the conclusion that it was a staff infection from a site infection. That is until the other hip did the same thing after 2 weeks in hospital. I was in a wheelchair and under complete nursing care and was unable to even shower myself.

They tried to control the pain with ketomine infusions, oxtcontin, endone, morphine and a whole host of other medications. I went into a code blue. Completely unresponsive. I had been overdosed. I remember trying to tell the doctors that I can hear them….but I couldnt actually move or speak. They promptly removed the ketamine drip.

After being in there for about 7 weeks, they decided to do an ultrasound on the affected areas. Alas, it was not an infection….it was and still is..tendonopathy. Quite a severe case. I eventually got back on my feet and went home.

I have had ups and downs….and am in the middle of changing from Enbrel to Remicade and have started methotrexate. I am also scheduled for a hysterectomy in January 2015, a few months from now and cant wait for that. I have always had ‘issues’ in that department, which all came to a head recently and this was decided as the best course of action.

So I continue life as it is and as it comes. I have a busy life, 2 young children, I run 2 companies from home, soon to expand, and still hold my public servant job, part time now. I still try to enjoy life but it does get me down sometimes, both physically and emotionally.

So for now, I continue to live and love my children, my partner and my life.

Kate

A.S. Face 1154: Chris Stanford

A.S. Face 1154: Chris Stanford

My name is Chris Stanford, I am 30 with a wife, 3 kids and currently residing in Sydney, Australia. I was diagnosed with AS in 2011 in NY, USA. As with many other faces it was a long diagnosis, I had varying symptoms since the teenage years and with treatment providing no ongoing relief I came to believe my aches and pains were normal and kept them to myself. I had frequent migraines, various muscle injuries caused by enthesitis, nerve pain which made it difficult or painful to sit, walk or just move depending on the day. I developed Carpal tunnel at 20, Costochondritis at 21 and married at 22 (ok so maybe this one wasn’t so bad). In the years leading up to my diagnosis I was working 2 jobs to support my family and felt that my worsening physical condition was due to the crazy hours I was keeping. In trying to touch my toes, I couldn’t reach my knees. I couldn’t lay flat on my back and slept sitting upright on the couch with two pillows to prop me up into the least painful position. I was 28 and felt like I was 82. In hindsight I thank God for the financial difficulty and 2 jobs I was going through because I’m convinced that if my life situation didn’t require me to move 18+ hours a day I would have had more fusion during that time.  At the time of my diagnosis my only fused joints were my SI joints, but my Rheumy at the time gave me the wonderfully positive outlook of “In 10 years you wont be able to drive because of fusion in your neck.”
Humira was the second thing I thank God for… wow. Do I still have daily pain? Yes. But except those bad days I don’t take any other medications. I’m not normal but on Humira most days I can get away with looking normal. Back in Sydney now and with my local GP who is wonderfully supportive and does more for me than my rheumy to be honest – rheumy seems more interested in my condition than me :/. So here I was getting caught up in it all, blaming all my pains on my AS, blaming the fact I couldn’t run around with my kids on my AS, blaming my fatigue on my AS. I felt like I was damaged goods and never really going to be able to get back to the person I was before all this. So I ask my GP what I can do about my fatigue, he tells me to start running. I ask my GP about my Costochondritis, he says stretch it. For those of you that suffer with chest inflammation, you’ll understand that both of those responses were not what I was looking for “yea right” I was answering internally. Reflecting on it all later I decided, what did I have to lose? I’m already in pain right? I had some family that was getting into 5k fun ‘mud runs’ it didn’t really interest me (I’m competitive, especially with myself). So I’d heard about this thing called Tough Mudder, and there was one coming up in 3 months. So I made an agreement with myself that I would train through the pain. Do some running, and some bodyweight exercise at home for those 3 months, and if it worked out, I would do this Tough Mudder thing. It’s now been 6 months since that decision and I am now stronger than I have ever been in my life, and despite my family’s doubts I completed the Tough Mudder, and did it better than most!. I started out running 1-2km with aching hips knees ankles and neck, now I am running up to 10km (with everything still aching and some plantar fasciitis as a bonus). What I love about my journey is that although it hasn’t made my day to day condition any better… it hasn’t made it any worse. Now I don’t have AS as an excuse as to why I shouldn’t do something. It’s the reason I do it anyway.
This year I have 6 events planned:
April – Spartan Sprint (7km obstacle Race)
June(not confirmed) – Tough Mudder with my brother(also has AS) & wife (20km Obstacle Mud Run)
August – Sydney City 2 Surf (16km road race)
September – Spartan beast (21km Obstacle Race)
November – Spartan Super (14km Obstacle Race) I am not only pushing myself to complete these events, but to COMPETE in them. I hope I can find a way to raise awareness of AS through these events and bring some encouragement to other sufferers. We are all going to have different limitations, but don’t set yours too low. Our bodies were designed to adapt, even if pushing past your limit means walking for 15mins a day – try it. I’m so grateful I did.
These are just a couple of things I’ve encouraged myself with over the last 6 months. Find what drives you and tell yourself every day.
“I will only be limited by my ability, not my disability”
“I am a Competitor, not a participant” (In sports, in life and in spirit)
Thankyou for listening, and good luck to you all.
Don’t give up the fight!
Chris Stanford
New South Wales, Australia

A.S. Face 0936: K.H.

A.S. Face 0936: K.H.

I was diagnosed with Ankylosing Spondylitis in August, 2009 at age 16 after three years of debilitating symptoms.  I inherited the disease from my Dad who is completely fused in the neck, spine and shoulders.
Talking, or even writing about my disease makes me unhappy and frustrated.  I’m putting this to the fact that I’m still young and am still trying to do things at 110% including volunteer work, college leadership activities (I think you guys call it a Sorority?), part time work and University studies.  Hopefully, sometime soon, I’ll be completely at peace with it.  I’ve accepted my disease and the course it runs but for now I think I’ll continue conveniently forgetting it exists.

New South Wales, Australia

A.S. Face 0912: Hazel

A.S. Face 0912: Hazel

Hi my name is Hazel from Central NSW, Australia

Like many stories I have had back pain for many yeas and last year I was diagnosed with AS.  After some bad flare ups this year I have now commenced humira recently.

Some days are really painful and difficult and other days are a little painful and not so difficult. Thankfully I have a supportive husband and great kids that know how to heat up my heat pack and make a good cup of tea!

Thanks,

Hazel

New South Wales, Australia

A.S. Face 0780: Sally Medcalf

A.S. Face 0780: Sally Medcalf

I have had symptoms since 15 but was diagnosed at 26.
My name is Sally Medcalf
Im a 36 yr old mum with 5 children. I worked on Ambulances until my condition meant I could no longer undertake the physical side of it. It was horrible loosing my dream.
I have lost so much mobility that I risked my life to bring my last two children into the world and it was worth it. I just wish I could play and hold them like other parents do.
The dx of Ankylosing Spondylitis wasnt that much of a surprise as my mother has it also.
I have reduced lung capacity and have learnt to adapt and fight back. I was in a wheelchair but fought back so hard that now I have spent the last 3 years without it. Only needing my walking stick at times.
I would love to wear a bracelet and would do so proudly.
Australia

A.S. Face 0597: Tracy-Anne Ganzer

A.S. Face 0597: Tracy-Anne Ganzer

Hi everyone I have been diagnosed with AS for about 12 years.  I was relieved at the time of diagnosis because I finally had a name for all of the strange and persistent symptoms that I had been experiencing my whole life.  It was not just “all in my head” as some doctors seem to say if they can’t figure out what’s wrong with you!  I have to thank my local GP at the time.  He had just taken over the practice and as soon as I walked in for my first visit, he took one look at my penguin waddle and sent me for tests.  Over the last 10 years I have been a little complacent as my condition settled down only rearing it’s ugly head for short bursts that resolved fairly quickly.  However in the last 12 months I have started experiencing some complications that at first didn’t realise were related to AS (in my defence no health professional realised it either…) so I am now taking charge of my health again.  First line of defence is changing my diet to be a lot healthier and demanding action from the health fraternity.  I have my first rheumy appointment for a long time next week so wish me luck and if anyone has some advice and which questions I “MUST” ask please feel free to share
Australia

A.S. Face 0448: Emily Rouse

A.S. Face 0448: Emily Rouse

Hi I am 26yrs old and have AS. I live in NSW Australia. I was diagnosed in 2005. I’m currently having Remicade infusions and they are the only thing that has seemed to help along with morphine patches to numb the pain so I can function almost normally. I was lucky in the respect that I was diagnosed within a few years of my symptoms so that helped although it has taken about 6 years to get the as under control so i can work part time. Still struggling but so is everyone else. Just trying to stay strong. Xx

Australia

A.S. Face 0303: Danielle Dawson

A.S. Face 0303: Danielle Dawson

I’m a 32 year old from Sydney, Australia with AS and Ulcerative Colitis. It all started roughly around 4 years ago a trip up to Cairns (Australia) and I came back with ridiculous pains in my shoulders, elbows, wrists and hands i had actually thought at first i was sleeping in a funny position  until My GP sent me to a Rheumatologist who first thought I had early stages of RA, that later proved to be wrong. 2 years later and still no answers and was onto my third rheumatologist who now is my angel. My back became that bad and my SI joints inflamed which would leave me crippled for a week, I had 2 lots of cortisone into the SI joints which only lasted a few weeks, I ached in every joint right down to my jaw, I had been on prednisone for the AS and for the Ulcerative Colitis for close to a year, my weight went thought the roof and I found myself depressed and still in pain, my life could no have gotten any lower at that point. My Rheumi had me on numerous meds which made me sick on a daily basis, the pain was still there every day from the time I got out of bed till the time I got into bed. I was a cripple getting out of bed in the morning and would be in tears even crying myself to sleep, at that point I felt like it would never end until Dec last year when my Rheumi introduced me to Humira. By the second injection I was almost pain free it was a miracle, my only obstacle was passing it through the govt as they funded it. 3 months later brings me here and 95% pain free (with chronic Tendonitis in both ankles) I’m back at the gym and besides a few niggles here and there I have my life and body back! Humira is my life saver! I guess the hardest part besides the chronic pain was peoples attitude was to get over it but little did they know how much it actually affects a person with AS and with the Ulcerative Colitis (inflammatory bowel disease) it was a double whammy for me. I think a lot of people need to be educated or at least have a brief understanding of this crippling disease that virtually came out of no where! I now am seeing my older sister go through it, the continuous pain and how much it drains you on a daily basis, she now understands what I went through even though hers isn’t anywhere near as bad as mine. What i have learnt from all of this is patience and appreciation, appreciation for my Rheumi and the patience which has finally gotten me to where I am today. Thank you for listening to my story.
Sydney Australia

A.S. Face 0211: Robbie Gratton

A.S. Face 0211: Robbie Gratton

Hi my name is Robbie Gratton, I’m 22. I live with my wonderful and loving girlfriend in Newcastle, NSW, Australia. I was only recently diagnosed with AS after years of complaints but now I realise that my AS story started long before I had thought. When I was 16 I was an apprentice chef at a local restaurant here in Newcastle and one day my left eye just went red, hot and painful. After hours of being in pain my chef sent me home and told me to get better. The next day I got an emergency appointment with my then GP who said it was nothing but conjunctivitis and I should take some eye drops and rest. I then spent the next three days gradually going blind in my left eye, so I was rushed up to The John Hunter Hospital and was quickly diagnosed with Uveitis and had some bloods sent off to test what had caused the Uveitis and was given a treatment plan to get my eye back in working order. After a few weeks and a steroid injection into my eye itself, my vision had come back and so had the blood results. I had HLA B27. I was a little shocked. The registrar gave me next to no information about what HLA B27 was, what it does or how to treat it. After being off work for a number of weeks I was dismissed and unable to find a new chef to take me on as an apprentice I decided to go to TAFE (Which is Australia’s version of community college) and complete my Higher School Certificate (HSC). While I attended TAFE I always felt tired and sore. I put this down to being just a teenager. Till my second and final year of TAFE my back pain was getting worse and worse so I went and say my now GP and after some X-rays he said that it didn’t seem to be anything wrong with my back and told me it might be muscle strain. When I completed my HSC I was automatically accepted to the University of New England to study a double Arts/Law degree.
In 2008, I moved the 350 km to Armidale NSW to start my studies. It wasn’t long till I started to feel my back constantly ache. Some nights my back would ache so much I  wouldn’t be able to sleep, and as a university student I wasn’t adverse to no sleep, just that it was usually due to all-night partying, however, that is another story. I was eventually able to see a GP in Armidale, which wasnt easy at all because Armidale is somewhat a country town, a place where businesses close while their staff go have lunch and where shops aren’t open on Sundays. The GP I saw was nice enough but agreed with my GP from home that it was just muscle strain and I should take ibuprofen when I need to (little did I know how much ibuprofen would actually help).
In 2009, After dropping out of university and returning home I quickly found employment as a door-to-door salesman. I would walk everywhere, for hours, 6 days a week. I was quite successful to the point where I was privately recruited by another marketing company and quickly became a team leader. Around this time I started to feel like I was having to symptoms of a heart attack all the time, shortness of breathe, pain in my left arm and pain in my chest (I would later learn that the pain in my chest was AS related and the rest was me freaking myself out) after frequent trips to the hospital I was dressed down by my then boss in front of the entire office for being a hypochondriac and that I should pull my “head in”. At this time I was also noticing my back was forever hurting so I started to use alcohol as away to dull the pain, seeing as no body could figure out what was wrong with me and I was starting to believe what people were saying about me, I was putting it on, I was playing it up, I was being lazy etc.
In 2010, I left the marketing company and felt as if the pain in my back was getting by far much worse and alcohol wasn’t numbing the pain anymore. So I went back to my GP who diagnosed me with scoliosis and sent me home with some stretching exercises to do. After a few weeks of doing the exercises I just felt like the pain was getting worse so I stopped the exercises and almost over night the pain went away and stayed away long enough for me to think whatever was causing it, was now gone.
In mid 2011 I went back to my GP and told him the back pain was back so he sent me off to get some X-rays and blood tests. After a month or so I was told that I might have a condition called Ankylosing Spondylitis and I would have to go see a rheumatologist. I waited a few more months to see my rheumatologist and was quickly given the diagnosis of AS. My rheumatologist told me all about what I was in for, what to expect from AS.  Now I’m waiting to qualify for the TNF injections. I don’t know what the future will bring but I know I’m going to fight AS, I’m going to fight it with everything I’ve got, even if it puts me in a wheelchair. I simply refuse to be an AS sufferer, I am an AS fighter.
Newcastle Australia