A.S. Face 0001 : Kevin Andrews
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.
Please feel free to check out my site: A.S.R.A.United Ankylosing Spondylitis Rheumatoid Arthritis United
Sussex, United Kingdom
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
Hi Kevin, Thanks for including your story and being the first to start this off. You know, I avoid being seen or being able to see myself too (I especially hate my shadow following me around), but so far I have been able to come out of hiding for my AS friends. You are a good leader and a better friend, Kevin.
James.
Thank you James I know it is hard for you and I admire you for doing it I am proud to have you as a friend. I have many plans for asra and I’. glad to have you there to be a part of it.
Kevin
Hi Kevin
Thank you for being a friend. You have helped me so much as I continue to struggle with this disease. Although it has been hard at times you have been a true inspiration for me.
Dear Kevin,
Thank you for sharing your story with us. It is a sad thing to have this horrible disease but I am glad good things came out of it for you as well. I have had bad experience with people and doctors as well. Many have no compassion and regards to others feelings. I used to be ashamed of what I have become because of this disease, with all the friends I thought would always stay friends have left, became unemployed, all the things I worked hard for years are gone in an instant, my home taken away, my social life gone, my dreams and aspirations are down the drain and so on… Reading your story made me realize more that it doesn’t matter what other say, whether they stare, point or give you the look. What matters is that we are alive, fighting and doing our best to move on and live our lives as happy as we can.
Regards, Jimmy
Jimmy Joaquin Maneclang said this on October 12, 2011 at 11:27 am
Thanks for sharing Keven…inspirational!!
Deb Wilcox said this on October 15, 2011 at 6:09 am
Thank you for your story Kevin. Your message is very inspirational. I was feeling pretty sad and in pain today and you made my spirit feel better
Diane Scribe Niiganii said this on October 19, 2011 at 3:48 am
This is my Dad. He is amazing, I wouldnt change him for anything. To me he is perfect. xxx
Christine Capon said this on October 24, 2011 at 8:48 pm
Dear Christine,
I think he is amazing too. He is one courageous man and inspiring so many people to take charge of their lives and make a difference. I am honored to call him my friend and humbled he calls me his.
Sincerely Cookie
Cookie Has AS said this on October 24, 2011 at 10:47 pm
You’re truly an inspiration Kevin. Thank you so much for sharing your story
Dear Freinds: My Name is Kevin Horton, I was diagnosed with A.S. back in 1981, i was 18 years of age, i broke my back at the age of 14, and a few years afterwards is when the doctors found out i had A.S., my lower back and my neck is fused, and i have trouble walking because my hips are in constant pain, my left eye is fuzzy at best and cloudy the rest of the time, i am lucky to have 4 hours of sleep in a 24 hour period, i have tried every possible med there is to offer for this awfull disease we carry, i worked for the federal government for many years, till i was not able to even function to get my self dressed, and got out on a disabilty, i have looked for years for a site such has this one, and just located it 2 days ago, i have read so many peoples ailments and it breaks my heart to see how others suffer just like i have and still do, i to am ashamed of the way i walk and get stared at, i lost everything i worked so hard for over the years, but i am still walking best i can and will continue to do so till my name is called upon, after reading some or most of these stories in here, well i thought i had it bad, only i was wrong, it makes me feel sad and my heart goes out to all who suffers more than i, i know what everyone is or has gone through like them non caring doctors which i have had and no longer care to go to, just because he or she has a PRIM AND PROPER LIFESTYLE these doctors, i am without a doubt they could not endure 5 seconds of the pain we all experience daily, my heart goes out to each and everyone who has this terrible disease, and i just thought i had it bad, may god allways be with you all with every step you take, i can only pray that someday soon they will find a cure.
Dear Kevin,
I too am thankful that you have been a voice for all of us. I had wondered the past 14 years why all the pain, trying to find a comfortable bed, etc. I just received my diagnosis a few days ago. I am trying to accept this difficult news and make educated decisions for myself. I am thankful to have found this site… Love to all of you…
Hi Kevin, Peace and may God bless you always in your efforts in bringing awareness to AS. Your brother in Faces of AS, Rob (241)
Thanks for that Kevin it is not often that I see someone who has suffered from A.S. almost as long as I have and whose posture is much the same as mine.
Thank you Kevin for your courage to share your story! Very inspirational!!
Thanks Kevin I have suffered for over 35 years with AS Myself and been thru a lot of pain I was diagnoised sept of 2012.My thoughts our with you.