A Vision Begins With One Man’s Courage

A life of Ankylosing Spondylitis

I am Kevin I am 57 years old and I live in England my problems started about 50 years ago at a time when even less was known about this Disease and if you had pains they where growing pains or imagination.

Treatment was nothing or pain killers. It took 23 years to get a diagnoses. Exact words from Rheumatologist who gave me diagnosis.

(You have Ankylosing Spondylitis it is a rare disease there is no cure and you will end up in a wheel chair goodbye see you in 6 months).

Well here I am 27 years later bent with severe Kyphosis fully fused spine,constant Iritis, breathing restricted by fused ribs, Chronic Obstructive Pulmery Disease. Insulin dependant Diabetes, IBS and Carpel tunnel syndrome.(But yay no wheel chair)

As you can see from my photos I am a classic case of Ankylosing Spondylitis. Its not a pretty site I know but this is me. I cant change the way I look I used to try and hide it avoid mirrors and shop windows and refuse to have my photo taken but recently realised what’s the point every one else can see me. Hiding from myself is not changing the way I look to other people and is just making me miserable. If I didn’t have Ankylosing Spondylitis I would not be me as I am now my whole life would have been different. I wouldn’t have my wonderful Daughters and Grandchildren I wouldn’t have met Joanne my very supportive wife. And I wouldn’t have met all the wonderfull friends I have who like me have Ankylosing Spondylitis.

So although AS is a very restrictive painfull disfiguring Disease remember you wouldn’t be the wonderfull people you are without it.

My aim is to make as many members of the public aware and under stand what we go through in our every day lives how we are not different from them we all bleed the same we all love the same just because some of us are bent over or fused bolt upright we are still human. If they want to stare I will stare back if they want to know more then ask we don’t bite. I have only known one person to stop and ask what I had wrong with me in all my years with AS. Talking is what spreads the word and makes people aware of us and our lives.

Hiding from our selves and our fears does not help us or make others aware. Always remember people with AS are strong in mind if not in body we have to be tough to survive in this world with all our problems always think positive enjoy your life as best you can even with your restrictions you only get one shot at it and most of all remember what we do for recognition of Ankylosing Spondylitis today and in our life time will make all the difference to the new generations of sufferers.

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36 Responses to “A Vision Begins With One Man’s Courage”

  1. Dear Kevin,

    I wanted to thank you so much for having the courage to post your pictures on line for all of us to see. I’ve been blessed to witness so many amazing people in our A.S. community doing phenomenal projects to raise awareness for Ankylosing Spondylitis. I’ve helped with many projects in little ways. I have wanted to do something that would result in a positive way in raising awareness on this disease. One of the things I have struggled with the most is the what if’s? What if I had been diagnosed earlier? What if the doctor would of told me I would fuse and couldn’t bend anymore or turn my neck? What if someone would of told me about what may or could happen?
    Would my life have been different. Maybe. Maybe not. But I will never know. I am a firm believer on reality and truth, especially when your life or quality of life depends on it. Thank you for giving me the vision to do something I have wanted to do for so long. Thank you for allowing me to see courage at it’s best. Sincerely, Cookie

  2. Kevin – you are a very strong person and thank you for posting your story and picture. I need to remember to stay strong in mind if not in body…I am still coming to terms with what could/will be in my future. I have a young son who needs me and I will strive to be my best self for him. You are an inspiration!

    🙂 – Jenn

    • Your son will love you whatever Jenn. I raised my Daughter on my own from the age of 3 and I couldn’t wish for a better more loving and understanding daughter. She never questioned my AS we just got on with a normal life as best we could. And now her children my granddaughters are the same they love me for me and we have fun doing the things I can still manage.

  3. hi i just read a few on here and i too am in the proses of diagnosis i have had all manor of tests ect one came back with LHA b27 am in pain constantly i have scoliosis of the spine .i have been told at this stage there is no fusing just inflamation my plight continues . i am so pleased i have you all as dear friends whom when i need advice comfert or just assurance your all here x love DNA

  4. Just found this blog last night. Thank you so much for this post. It is very inspiring and I am currently writing my own story and deciding what pictures to send along. My story is very similar to yours.
    Thank you for sharing.

    • Thank you so much Jake, we can’t wait to add your story. I was so inspired by Kevin’s courage that I had to do a site where we could all tell our stories and show the courage it takes to live our lives. Keep in touch, I am adding new faces every day!

    • You are very welcome Jake. I look forward to reading yours.

  5. Thank you for posting your story and picture. I plan on posting my story too in the future when I can gather my thoughts. I’m also fused with severe kyphosis. I ‘m still trying to come to terms with the way I now look. I appreciate your way of dealing with all the talking this disease for us, even when say nothing out loud at all.

  6. Heather it takes time to accept the way you look. I hated myself for years and wasted a lot of time trying to hide it you find the genuine friends will accept you whatever. The others are not worth knowing.

  7. This site is growing very fast very pleased to see you all posting.

  8. Kevin, you are amazing! Everybody on this site is a true hero.

    I visited this site to read my friend’s story but I kept clicking on pictures and stories and I stayed for hours. I would close the site, I was so moved but then I’ll come back.. it is not easy reading about all this suffering and not being able to help.
    wish I could do something for everybody here..
    I hope they are close to finding a cure.

    You said “it’s not a pretty site”. You guys here are the most beautiful human beings I have ever encountered.
    I am honored to have met Diane and to be able to at least leave this message to you.
    Wish I could give you a big hug.
    You will all be in my prayers. God bless you and never lose hope!

    Lana

    • Lana, you have just made all the hard work so worth it. To know our “Faces” are touching others who don’t understand what we go through is the reason I started this. To touch one person at a time, who will touch one more person and then the awareness of our reality begins. Welcome and stay near, we are always adding new “faces.”

  9. Thank you very much for reading Lana and for your kind words. xx

  10. Thank you Kevin. God Bless you for sharing your story. I am 26 and recently diagnosed with AS. So far I have not been given much information regarding the disease and find myself turning to the internet for my own research. I’m scared, but I have hope answers will be found. Thank you for sharing your story to inform others.

  11. Kevin,
    I am so touched by your post and your honesty about A.S. I am amazed by your strength and courage in the face of physical adversity. I am encouraged by your optimism (yay no wheelchair! 🙂 I was diagnosed 4 years ago and have been learning to live with this disease…For now, my case is not aggressive, but I am nervous for the years to come. What will A.S do to my body? What will the medications do? Thank you for helping me see that I shouldn’t mourn the loss of what I can’t or won’t be able to do, but to rejoice in the things that I can and will be able to do. Thank you for putting this all together. It means so much.

  12. You are an inspiration Kevin. Thank you for sharing your story. (hug)

  13. Hi Kevin, I’ve been trying to catch up on everyone’s stories. Thank you so much for being brave enough to share. 🙂

  14. Just wanted to leave a message supporting my amazing Uncle .. Kevin Andrews .. he’s an awesome man with the most loving family who are all credit to him. Having AS does not change who he is and he always spends his time worrying about other people and not himself ( even nagging me now that my dad, his brother is no longer with us ) just to let you know unc you can nag me i don’t mind really 😉 love you millions Alison x x

  15. Thank you Alison I love you too. xxxxxxxxxxxx

  16. Thank you for sharing your story. It helped me pull myself together this afternoon after a really bad flare last night. It helps to talk to others who can sympathize and understand circumstances. It is my hope you continue enjoying life.

  17. I am 24 year old from India. I have been diagnosed with AS 7 years ago. One thing I wanted to share is past few months I am doing great. I started with water aerobics in summer it helped me a lot as it is a low impact exercise and running in deep water without impact, helps a lot to get to same cardio intensity as running. As, I got better I slowly started with weight training, a few weeks I spent just adjusting to those exercises doing mostly cardio. Then started with basic weight exercises. I train each part seperately on alternate days. I train 6 days a week, 3 days aerobics, 3 days weight training and I am doing well. I take 60 mg etoricoxib( I think is not allowed in US) and 500 mg sulfasalazine. I get pain if I don’t take medication for long time, but I make sure to take them everyday. My hunch is totally gone, I can run and slowly carry weights. All I want to say is water aerobics works best, I have tried yoga also earlier but it needs some strength in muscles to perform, and hence you need strength training.
    Be open to criticism or any corrections, I would like to improve. Loving the way I am progressing. All the Best.

  18. You are indeed a very brave man. I admire your resiliance and your positive attitude towards living with a debilitating condition. I myself have a severe case of Crohn’s which has nearly taken me twice due to severe complications. I also have AS and periodic iritis. I recently had a resection where about 2-3 ft of my intestine was taken and I now have an illeostomy that I may have to cope with anywhere from 6 months to forever. Seeing your pictures brings about a deep sense of empathy for your condition and its severity and as well a resentment for such diseases that plague us unlucky few that are chosen so randomly by the mysteries of nature and biology. I am very happy that you have a loving family that supports you. I am currently in hospital for the past 4 months after going into sepsis after my resection blew and turned to pertonitis. My mom comes every day (I’m 26) and without her I would feel alone which is the worst feeling when you are suffering as we do. I hope and pray that one day yourself and I will be given a cure from these terrible immunological disorders. Too bad we couldn’t just give our immune systems orders from the top! Hey you immune system stop with the friendly fire! Anyway I’ve gone on enough.
    I apologize for the long message as I’m in hospital and quite bored so I can get away from it all.

    Cheers and long and healthy life my friends! Especially you Kevin. Keep calm and mosey on I say!

  19. Hello every one I’m sorry I have not replied to any one on here for a while. Things have not been brilliant the last few months both health wise and personal. I will right an update soon . Thank you for all your messages they mean a lot to me.

  20. I am a 52 year old female..I have always had bad posture.my grandfather had severe kyphosis he was very stiff but did not complain much of pain.he died when I was 10 years old and he was about 81 at the time of his death.no other family members had any complaints of arthritis except for me..I was very embarrassed by my posture and about the time is 18 I went to a famous back clinic in Memphis Tennessee.I was told that I had several malformed disc in my backand with a my posture would worsen and pain increase.so as I I didn’t become that concerned until I was around 38 yrs old and my pain has gottenunbearable at times

  21. I am a 52 year old female..I have always had bad posture.my grandfather had severe kyphosis he was very stiff but did not complain much of pain.he died when I was 10 years old and he was about 81 at the time of his death.no other family members had any complaints of arthritis except for me..I was very embarrassed by my posture and about the time is 18 I went to a famous back clinic in Memphis Tennessee.I was told that I had several malformed disc in my backand with a my posture would worsen and pain increase.so as I I didn’t become that concerned until I was around 38 yrs old and my pain has gottenunbearable at times.I was still a nurse at the time& l felt something much worse was going on than degenerative changes.a family practitioner at the time orders a cat scan of my neck and back and it showed onlymoderate degenerative changes.my pain was worse and I was becoming increasingly stiff .by the time I had reached 40 I was barely able to turn my neck and waist area.due to insurance changes I was seeing a different family practitioner,he ordered cat scans mri numerous X eshe had sent me to a RheumatologistI

  22. this is Robin again, sorry about my awful typing! this is my first time to get on the web about A.S. I would like to finish telling others of my unfortunate experience.I take responsibility for not going to the doctor sooner.I had a lot of personal and family problems going on and unfortunately l let my health suffer because of it ….As previously said, my family doc.sent me to my first rheumatology visit after my MRI, CT results & Xrays were showing drastic changes .I had NUMEROUS bone spurs severe spinal stenosis. I am hlab27 negative &female. I misdiagnosed by the 1st rheumatologist as having DISH disease &needed OTC anti-inflammation meds & told me I should improve my posture and to take over the counter anti inflammatories,but would continue to see me(if I chose) but there was very little that could be done Unfortunately that was the only rheumatologist on my insurance plan in my town and I was already having trouble driving due to the stiffness in my neck, I take responsibility for not seeking another opinion but I have been told to stand up straight and work on my posture since childhood.Dish disease has some simular symptons but is an osteo.arthrits related dz.and was told it does not progress as quickly as A.S. I continued to get increasingly worse and my family doc. was convinced that I did have A.S..I guess I had given up.he made it clear to me that if it was A.S..what kind of damage it would do to health.We had gotten a new rheumatologist in our town that accepted my insurance.Upon my second visit to this rheumatologist.she had me diagnosed with A.S.and had started me on a plan of treatment but I have irreversible damage to my joints and I’ve had to have cervical spine surgery.I am currently taking Enbrel and am tolerating it well.my advice to others is put your health first If you need a second opinion please get one don’t wait ! If Id had a better attitude,and put my health firstmaybe things would be different for me.if I may ask you,how long have you been in your current condition.my neck curvature and state of kyphosis is about same degree.I had an episode last summer that my neck seemed to drop further down and become even weaker.Thank you for letting me use your site.to tell others my story.when I saw your picture it gave me strength.unfortunately my son at 25 started coming down with A.S.symptoms.Fortunately my wonderful rheumatologist was able to diagnose him quickly and start treatment on him.he is also hlab27 negative.if there was anything good to come out of this for me is that I had a good doctor to refer my son to and that he got diagnosed qiuckly&is getting great care.god bless you and have a good day.

  23. Dear Kevin,

    I’m Asar from Malaysia. I have the same physical as yours but I’m only 29!! I’m still single and I have lost my job. I’m down with housing loans, car loans (..although I can’t drive like how I used to before) and other commitments. I started to get sick 2 years ago when life was just starting, but it progressed so quickly until I’m about to lose everything now.. I want to kill myself, please help me!

    • dear asar,
      Things may go wrong sometimes, it is never understood how one gets any disease even if that person keeps him/herself clean and hygienic.
      AS is painful i agree but giving up at so younger age is not acceptable. Please don’t think about ending life, just enjoy small small moments that occur daily in life, that will at least make you forget about pain for a while. There are people who are suffering with extreme pain due to other disease but they never have “Lets Die” attitude. Give some time, be alone, mediate and discover your self again. Job will come eventually, loan ‘ll be paid… just dont give up.. you have to be Strong and happy.

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