A.S. Face 2160: Claire Coleman

A.S. Face 2160: Claire Coleman

 
Hi my name is Claire Coleman, I am a 44 year old married mum of 3.
I have just recently been diagnosed with AS after years of back pain, digestive issues and uveitis.
I hadn’t even heard of ankylosing spondylitis before, yet it’s surprising how many people actually have it. More awareness of this condition is definitely needed.

A.S. Face 2123: Amelia

A.S. Face 2123: Amelia



My name is Amelia and I am 51, I was diagnosed with AS five years ago after a massive flare that lasted from August 2013 to April 2014 though I have had symptoms since I was 15 yrs old
I am very resilient and independent which means I keep smiling and don’t give up even when the exhaustion means I can’t think , speak or put one foot in front of the other. I just think there are other people who are worse off than me so I just keep smiling.
Swansea, South Wales, United Kingdom

A.S. Face 2117: Melissa

A.S. Face 2117: Melissa



I am a 34 year old mum of two and I have AS.

A.S. Face 1711: Leanne

A.S. Face 1711: Leanne

Hi my name is Leanne I have suffered with A.S since 2009 but it was only in 2016 the doctors finally told me what it was it took 7 years of tests and lots of different doctors but finally I got an answer and it is thanks to sites like these that help me understand and make me feel like I’m not alone in this fight.

A.S. Face 1533: Karen Nolan-Evans

A.S. Face 1533: Karen Nolan-Evans

A little about me
From Wales, UK.
SPORT:
I played football for most of my childhood and early 20s. I also praticed TKD where I gained my 2nd Dan Black Belt,
Mid 20s I started Kibckboxing.
During the last 6-12 months of training in kickboxing I was finding movement and twisting a big struggle. I could barely do sit ups as I was getting intense back pain. My knees started to weaken and I needed several surgeries on them.
My left knee needed an osteotomy which resulted in me not being able to return to kickboxing. I could have returned and concentrated on earning my belts but I found it too difficult to watch others sparring and not be able to join in.
Bodybuilding:
I moved home January 2012 and joined a local gym called Muscle and Fitness Barry Island. After a while the owners (Guy and Karren Sillett) encouraged me to take part in a local bodybuilding competition. Although I have always weight trained, since age 16 years, I never trained with the intention to grow as much muscle as possible. My previous training background certainly gave me a good stepping stone into bodybuilding training as I loved the intensity and discipline of the sport. I entered the NABBA Wales Miss Trained Figure category where I placed 2nd. I was hooked and couldn’t wait to compete again. Two months later I entered and won the BNBF Welsh Natural Bodybuilding Championships. I was invited to the BNBF British Finals in Manchester. I was an opportunity I couldn’t resist and although I didn’t feel quite ready I decided to enter for the experience and to learn as much as possible. Just being on the same stage as some o the more experienced girls was an honour.
After this season I was selected to represent the UK at the INBA World Championships in Slovakia June 2014. An opportunity I couldn’t let slip between my fingers. I travelled to Slovakia and although I didnt place I learnt a lot about my body. The journey over caused a huge flare up and I struggled to walk. Competition day I struggled to remove the excess water I had built up due to the inflammation and what use to be a nice set of abs turned into a bloated mess. Despite this I remained positive and did my best. I was proud of myself for competing in an able bodied class with this disease.
Soon after I decided not to compete in bodybuilding again. That was until Sonia Armitage, organiser of the IBFA Miss England championships encouraged me to enter her competition. I wasn’t even aware there was a disAbility category available and thought it was just for people in wheelchairs. I am looking forward to making my debut in this category.
I am still hooked on this sport and cant ever see me stopping. Bodybuilding helps the symptoms of my A.S. The strength work helps with the joints and I;m convinced the healthy diet required for this sport also helps my symptoms.
A.S
I continued to have joint trouble and saw a spinal physio who referred me to a rheumatologist. As a result and many examinations I was diagnosed with sero-negative Spondyloarthropathy.
Since that time I have been on several DMARDs (Disease-modifying anti-rheumatic drugs) namely Sulfasalazine, Oral Methotrexate, Sub cut Methetraxate (self administered) and Leflunomide, aswell as anti-inflammatory medication. I am currently receiving antiTNF (Cimzia) aswell as other meds.
I started to develop increasing spine and hip pain over the autumn and winter of 2013 and had an MRI in January 2014.
The results showed quite bad inflammation in 5 vertebrae (lower 3 thoracic and upper 2 lumbar) which led my Rheumatology Dr to change my diagnosis from Spondyloarthropathy to Ankylosing Spondiltiis. I was then referred for anti-TNF treatment.
Since the diagnosis I’ve had several surgeries aswell as the osteotomy including ankle reconstructions with LARS (http://www.lars-ligaments.com/) on both ankles. End of 2014 both LARS ankle surgeries failed. The ligaments had ruptured somehow. Dec 30th 2014 I had my left ankle LARS repaired and had arthrex ligaments fitted. I am now on the waiting list for my right ankle to have the same procedure.
AntiTNF was going well until I had to stop taking it so I could have surgery over new year. I have restarted it but it hasnt had the same effect. I am currently waiting for another MRI scan result to determine whether the disease has progressed so my doctor can decide whether to change the treatment.

Karen Nolan-Evans Disability Bodybuilder

I have Ankylosing Spondylitis and I am a bodybuilder. The two shouldn’t go together, but I make it work.

 https://www.facebook.com/pages/Karen-Nolan-Evans-Disability-Bodybuilder/737075163077498?ref=hl

Wales, United Kingdom

A.S. Face 1526: Daniel Owens

A.S. Face 1526: Daniel Owens

A.S. Face 1119: Melissa

A.S. Face 1119: Melissa

My name is Melissa and I am 24. I have suffered from AS for an estimated five years, though I was only diagnosed two years ago. Before my diagnosis I was referred to a chiropractor, who spent an hour each session clicking the bones in my back, something that I later found out could have done far more harm than help. After suffering from a sciatica attack which lasted four months and stopped me walking properly, I went to the doctor and was referred to the hospital for tests. After x-rays, MRI’s, blood and urine samples I was finally diagnosed with AS and prescribed Ibuprofen and Physiotherapy. I attended Physio every day for a month, however I had to leave the programme early to embark on my first master’s degree. I am only now being referred to a rheumatologist however as my files were apparently mixed up, but hey, two years late is better than never! When I was first diagnosed with AS I felt incredibly relieved to finally have an answer for so much pain, however on realising how complex and potentially awful the answer was, I became quite bitter and resentful. It took me a long time to find happiness again knowing that I would find it very difficult to do all of the things a normal girl in her twenties could do. Watching my friends pull off extravagent dance moves and sit cross-legged on the floor drove me to despair, knowing things as little as running up the stairs were virtually impossible for me. Hobbling up one step at a time and trying to find the comfiest looking chair in the pub to watch my friends dance became my depressing lot in life for months, However I finally began to accept that AS was real, and I had it, and I realised slowly that moping would not change that. I finally got over the depression, admitted that I was never much of a dancer anyway and promised myself that I would start living again. I’m now feeling much better within myself. Through exercise and various tricks of the trade my movement has improved and pain has reduced. I’ve just completed my second master’s degree and currently work in a school, which is I feel a perfect career choice given the lack of strenuous physical activity required to complete my job. On an average week I complete various stretching activities, prone-lie for at least an hour, go to bed every evening with hot water bottles pressed to my back and attempt to swim or go to the gym as often as possible. In the new year I intend to create a monthly video blog regarding living with AS, tips for dealing with it and different exercises that have helped alongside other peoples stories in the hope that it will bring recognition and help other sufferers. There is not a day that goes by that I am not in some form of phsyical pain, but there is also not a day that goes by that I do not overcome it. AS is a horrible affliction, one that creates an old temperament in a young body, that shackles movement to pain and requires constant optimism to achieve even basic tasks. AS has made me stronger than I ever thought possible, it has given me the determination to succeed and is responsible for my stubborn optimism, and so in the midst of all the pain and ache and stiffness, there is always some light to be found in the dark.

A.S. Face 1042: Barbara

A.S. Face 1042: Barbara

My name is Barbara and I am going to be 25 years old in two weeks. I have two beautiful children a boy named Blazej who is six and a girl Izabella she is four. I’ve been diagnosed with AS a year and a half ago.
Before the pain I was full of life, I had friends, goals, plans. I couldn’t stay home for longer than a few hours. I was running, playing volleyball. I was laughing so much, everything was bringing me enjoyment. When the pain started I was blaming it on heavy lifting, as a kid I had to do a quiet a lot of it.  whilst being pregnant with my son, my gp told me that pain in the back is normal. After that I didn’t have much time to think about my pain , I had a newborn and I had to focus on him,  second pregnancy my pain started to be worse, but again it was explained to me as something normal – I felt those looks on me… no I wasn’t exaggerating, it was so painful. I came to the UK whilst I was 6 months pregnant, after giving a birth to my beautiful daughter, the pain started to be worse. There was days when I was crying and begging for some medications because I couldn’t cope with it any more. But again – its was “normal” after givin a birth. Why then every inch of my body was screaming : its not normal! Something is wrong!?
In two years time I have seen so many different GP’s. I’ve heard that my pain was usual. That its because of my pregnancies and probably worse because of my periods. I heard that I should take a paracetamol and there is nothing they can do for me. I didn’t have much fight in me left. I wanted to give up and stop going to GP’s. What was the point? I’ve started to believe that I am exaggerating. I didn’t want to feel those looks on me again.
My partner didn’t gave up…. He believed me and was my rock.  He was keep saying: – I’ve seen you in many kinds of pain, you have never cryeid, complained or stayed in bed, no matter what was wrong with you. Right now you are crying and you can’t get up. There is something wrong, no matter what they say.
He was taking me to one appointment after another.  He was massaging my back when I couldn’t sleep, taking my kids to school.
After 2 years of going back to my doctors I’ve meet a new one. I was crying when I was explaining to him what I went thorough for the past few years. He looked at me , refered me to the rheumatology department, send me for MRI scan. I don’t know where I would be now if he didn’t take me seriously back then. Few months after I was diagnosed. AS
The first thIng I’ve done when I came home was looking for some kind of informations…After finishing reading it I was shaking : NOT CUREABLE RARE
I wasn’t sure if I’ve prefered not knowing what’s wrong with me….
How am I going to be able to be a mum with this? Why did it happened to me?
I had horrible thoughts, I didn’t want to spend the rest of my life with this pain. It was unfair.
I’ve changed, my pain changed me… The fact that my little boy is coming back from school, asking me every day how I am feeling, is breaking my heart.
The fact that every time when somebody asked me what’s wrong with you? I am saying I have AS and they don’t know what is that , is upsetting.
I am 25 is should : LAUGH GOING OUT WITH MY FRIENDS ENJOYING SPENDING TIME WITH MY FAMILY BE ABLE TO GET UP FROM THE BED TAKE THE MOST OUT OF MY LIFE BE ABLE TO WORK
Instead I am spending my life managing my pain, taking variety of medications, which are not helping me and explaining people what AS is… I’ve stopped talking to my friends about my pain, I’ve stopped talking to my partner about my pain. I am slowly stoping answering to the question : How are you?
Because all I want to do is scream : I am in pain! Day after day after day! Doesn’t matter if you ask me tomorrow or the day after tomorrow,  I will still be in that stupid, exhausting pain! So stop!
I miss the old me… But most of all I miss the fact that I could be an amazing mummy if I wouldn’t be hold back by pain. Yes, I do my best. Yes, my best is more than enough for my kids, but still if not AS I could be so much more for them…..
That’s my story… Which doesn’t have a happy ending yet. Who knows maybe in a years to come there will be a cure?
Wales, United Kingdom

A.S. Face 0942: Annie

A.S. Face 0942: Annie

Passed away February 14, 2016

I was diagnosed with AS when I was in my early 20s though I think I had symptoms for many years before that- including my gym teacher telling me off for not being able to do the high jump back flop although I looked tall and sporty. I am now 59 and my picture shows me after I got my MSc (Research) last year. I put the sticks by the bushes in my garden so this is just before I fell down!  It was hard going as I was working full time and had a family and I had to ask for extra time as I had 6 months confined to bed with severe AS symptoms combined with haywire diabetes while I was doing it. I have other complications as well but try not to dwell on them.
I just want to say that even if diagnosis is devastating, with perseverance and support you can still have a GOOD life even though you have to sometimes live within the confines of day to day illness/ fatigue/ infection. I often sing the praises of Embrel that gave me back a certain quality of life and help me get back to work as a genetics researcher in a University, after being sick of seeing the four walls of my bedroom, reading a thousand books on my kindle  and achieving massively high scores on Angry Birds on my IPAD as I didn’t have enough strength to hold a book …
Thanks for all you do – much appreciated.
Annie
Wales, United Kingdom

A.S. Face 0537: Gwyn Hughes

A.S. Face 0537: Gwyn Hughes

I’ve had AS. since I was 20 and am now 65 , it took 3 years to diagnose and have had pain all these years up until about 2yrs ago …for some reason I have no pain anymore , and am able to enjoy sport once again (Crown Green Bowls) ….and do some light D.I.Y. …the only problem being tiredness possibly due to my age ….in my teens I was active in football (soccer) locally …and missed it so much when the AS started …limped about for years…slept alone , awake most nights …and took the usual anti -inflammatory tablets , which had a side effect of producing stones in my kidneys …just hope this message gets through and although my upper spine is stiff  there can some hopelater on in life after a long period of suffering ….
Everyone take care ..if you wish to chat via e-mail please do forward anything you would like to query …I’ll try and help if I can .
Gwyn Hughes .. North Wales United Kingdom

A.S. Face 0350: Matt

A.S. Face 0350: Matt

A.S?

Where do I begin?

I fell down concrete stairs when I was 15, I was racked with agony for a month but it did ease off….for a while anyway.

2 years later I was diagnosed with A.S. Regular sessions of Hydro/Physio were recommended. Yeah right, I was 17 years old!

I wanted to do what all 17 years boys want to do, work out, get a job and get laid! So I ignored what the Doctors said and I

threw myself into getting fit, Muay Thai, weight training, circuit training, sparring!!!

Did that for 6 quality years!

Of course…the good times rapidly came to an end! All the symptoms of A.S hit me like a freight train when I was about 23, my neck stiffened,

problems with my shoulders, my spine completeley fused and curved. I was always tired, in pain, always wondering why is it that I’m the only one with

this f*****g disease? By 26 I think my mood was so dark that I became a recluse…considered myself a freak!

Ha! A freak.

A little over the top perhaps but that is how I felt.

Also then on occasions i would have violent mood swings, I didnt know whether I was going to hit

something or break down in tears or both. Also I had to sell my house, sold on the friday which was pure luck as I was due in court on the following

Monday for a repossession order!

Phew!

By the time I was 31, well, I think I had lost it. I had snapped and somehow plucked up the courage, made some phonecalls and visited a Rheumatologist.

I told him what was going on and that I had heard of the operation where they cut you open and straighten your spine…I told him I wanted it asap and I didnt care

about the risks.

4 months later Im in the Hospital on a bed heading for surgery

It was a success, the op straightened me up, Im on Humira, I exercise a lot. Now I just need a job! But even though the operation straightened my spine it certainly didnt

cure the condition. But I wouldnt go back to the way i was.

What I’m saying is, I know exactly how you guys feel…always remember that there is help.

Don’t do what I did…I am an example of what happens when you do the wrong things

A.S though? Who needs it?

Matt  (Age 36)

Wales.

A.S. Face 0346: John Connelly

A.S. Face 0346: John Connelly

My name is John Connelly, I am 44and single. I live in South Wales, UK although I am originally from England. I am a part-time Civil Servant and full-time pain in the ass! Hobbies include: Reading, console computer gaming ( I am a UK member of Old and Rubbish PS3 gaming community), I enjoy watching sports, mainly F1, MotoGP and other motorsports. Diagnosed at 16, HBLA-27 pos, heavy symptoms started at 23, had right hip totally replaced in 2011, and I have moderate to severe kyphosis (Approx 25-30 degree “down-angle” in thoracic spine – still could be worse I could be really ugly too, with no sense of humour!) As you can see from my photo, I have a keen sense of fashion and my tongue is firmly in my cheek. Now please excuse me I have to continue my training for the 100 Metres Looking Downward event at London 2012 Olympics!

Love, Light and Peace.

John

South Wales United Kingdom

A.S. Face 0341: Joanna Vickers

A.S. Face 0341: Joanna Vickers

South Wales, United Kingdom

A.S. Face 0082: Rob Lesauter

A.S. Face 0082: Rob Lesauteur

I’m Rob, 33 from Aberdare, Wales, UK  I have As and Fibromyalgia, had this condition now for about 10 years.  It is very crippling and depressing.  People need to made more aware of the debilitating condition like this.  People have told me ” your faking it to get out of work”, “There is nothing wrong with you”..If only they lived with the pain for a day then they would change their mind !

Aberdare, Wales, United Kingdom