Many famous people have or had ankylosing spondylitis:
- Ed Sullivan, variety show host
- Norman Cousins, entertainer
- Mick Mars, guitarist for Mötley Crüe
- Christopher Pappas, singer-songwriter
- Rico Brogna, MLB player (Phillies and Mets)
- Vladimir Borisovich Kramnik, Russian world chess champion
- Ada Choi Siu Fun, actress and model
- Mike Atherton, English cricket player
- Michael Slater, Australian cricket player
- Mike Stafford, Canadian radio personality
- Jens Stoltenberg, Prime Minister of Norway
Do you have AS? We’d like to tell your story, if you want to share it with us. Send us a jpeg, too, so we can put a face on this disease, so when it raises its ugly face we can picture a better one — yours, perhaps?
We don’t all have AS and we’re not all athletes, but together we are standing tall and raising awareness.
Tags: arthritis, AS, patient, spondylitis, story
Norman Cousins did not have AS, he had reactive arthritis. This is important to people with AS, because Cousins claimed to have been cured with laughter. AS is not curable, and so the Cousins-cured-by-laughter myth is insulting to us because it implies that it’s our fault we have this disease. Please delete Cousins from your list in order to avoid spreading the myth.
Norman cousins didn’t claim to be able to cure AS with laughter, he said it reduces the symptoms of chronic pain, which is medically proven. Looks like you should give it a try, lighten up and it’ll help.
Good point, John. But unless Cousins is exhumed, we won’t know for sure. If we don’t delete him maybe we’ll at least add an asterisk by his name as we go about “spring cleaning” the site in the next couple of weeks.
It is true that many experts these days are suspecting that he didn’t have AS. However (Tom), having lived through the “Norman Cousins” era, I know first hand that he frequently claimed that he and was said to have cured his “terminal” illness by laughter.
We know that AS is not, in itself, terminal — if that’s what he had. But no doubt, keeping a positive attitude helps — if you have the luxury of keeping a positive attitude. Not all of us can do that all the time. I sure can’t.
In any case, we’d really prefer that remarks on our Web site be positive and supportive of one another. We have enough other things bringing us down, don’t we? Like gravity?
I was diagnosed about 4 years ago with AS. I am in so much pain there are days when I want to die. I also suffer from chronic MRSA infections. I am losing hope. Right before Christman the doctor said i may have the early signs of Parkinson’s Disease as well. Is there any chat groups for those with AS?
I’ve come across some forums while surfing the net, but I don’t know that I’ve seen any chat rooms dedicated to AS specifically. Shoot me an email… I frequently chat with site visitors. Thanks!
I just got told today that I have as. Im freaking out. Will the symptoms go away with medications?
Some, but not all. I’m taking humira now, and it has helped me tremendously. Feel free to email me directly if you’d like to talk about it: brian.warner@joinedagainst.org
I was a firefighter/EMT for 14 years. I developed chronic low back/hip pain at the age of 24 (the hallmark symptoms) but was misdiagnosed 3 times over the period of my career. I was told it was due to my height (6’5″) and the type of work I was doing. At one point early on a Dr considered I was a drug seeker, which insulted me as I was truly in pain. Eventually I got a proper diagnosis, which ended my career, as you can’t be an EMT if you can’t lift 125 lbs (Your half of the cot). I became a DJ for awhile, but it got to where I couldn’t move my equipment anymore. My spine is fused in several places and it is in my neck now. I have successfully gotten my disability and am retired now. My biggest issue is that there is a stigma that people complaining of back pain are either lazy fakers or looking for drugs. My career was the best time of my life and would gladly go back to it if I could.
http://forums.spondylitis.org is the best forum for people with AS. Infact it is superb and helps with everything. There are thousands of members across the world.
This is for Delores (and any others who are interested)…there is a chat room set up that “meets” Saturday mornings at http://www.spondyville.com Also check the http://www.spondylitis.org website for a directory listing of the support groups that may be in your area. All the best!
I have been looking up info on AS because my father has it and found out that i have many of the symptoms of AS. Is there anywhere that I can go to find out for sure if I have it or not. Please let me know. Thank U.
I am 26 years old, I started getting back pain when I used to play football when I was 17. I also have a rounded back but my parents just put it down to me slouching a lot. By the time I was 24 I was getting chronic pain in my hips and would sometime be limping about after being diagnosed incorrectly as a muscle pull once I got correctly diagnosed as AS. After 6 months of exercises and stretching the pain was still there and the doctors decided to put me on Embrel. I am now 6 months into using Embrel and am delighted with the results, I still occasionally get pain but it’s nothing like it was before and I can now exercise and go to the gym again which I couldn’t do for 7 years. Go to the doctors if you get chronic pain and get it treated as quickly as you can. My back will always be rounded and may get worse but I can live a good life and am a lot happier in myself if anyone knows of any treatments I can get for my curved spine can they please get in touch with me at gaz_savage@hotmail.co.uk
I am female and my AS was diagnosed in 1980 (when I was about 23) after a couple of years of back and hip pain, and then some episodes of uveitis and colitis. I was prescribed Naprosyn at that time and took them for a couple of years. Then, because I felt okay and hated taking tablets every day, I gradually cut them out and was okay (apart from morning backaches) until last year when the AS started affecting the tendons in my ankles, so am now back on Naprosyn again with reasonable results. I HAVE had uveitis on and off over the years so I can’t say I was completely free of AS in the years between, but just thought I’d put this out there as I know women who have AS are in the minority, and to let you/them know that the diagnosis doesn’t always mean you’ll have the same level of pain for the rest of your life. I do count myself as lucky because I know this isn’t the case for many people with AS, but just so you know – it could be for some of you.
PS
when I was first diagnosed it regularly took me 5 minutes to get up out of a chair, I was virtually unable to walk, and had to be helped getting my legs out of bed in the morning. [just in case anyone wonders if my initial symptoms were only mild ones!]
I was diagnosed whilst serving in her majestys armed forces, it took them a few times before a visiting specialist had a look at me, like Mark Rosso some of the drs decided I was trying to skive from my duties, this annoyed me as i truely loved my job, i now have Rheumatoid Arthritis which doesn’t help matters in the pain department. What has helped considerably is an injection once a weeek of Embrol best thing thats come my way in many many years. The pain is still there but no where like what it was before.
I hope you all get a chance to try this drug as it really has changed my life, I’m walking straighter and taller. I’m able to move my neck & hips without to much discomfort. I can now even put my socks on quickly & without frustration.
My name is Jessica, Im 29 years old, I was diagnosed with as less than a year ago and midiagnosed for about five years even though i have a family history of joint disease and ulcertive colitis and every symptom it took one visit to a rheumatologist to figure it out and four to five well respected neurosurgeons to ruin my life as they hacked my back up for three years before one mentioned a rheumatoligist. I am positive for the bla h27 gene. I constantly feel that my pain management dr thinks im a drug seeker, after having eight surgeries i cant believe he treats me like that. Hes the last pain management dr that will let me pay out of pocket and the ones on my medicaid/americhoice insurance will not prescribe the pain medications im on. I dont know what to do. Im in constant pain and I dont want to live anymore. Ive tried everything, oxycontin, dilurden, humira, percocet, fentanyl patches, lidoderm, every perscription muscle relaxer, every anti inflamitary , physical therapy, surgery and nothing seems to help!!! Im constantly sick, in the hospital and in constant pain. I need a new pain doctor and any ideas for treatment. I will try anything!!! I cant live in this pain anymore!!! I live on Long Island and cant travel far but if you know of any good pain doctors please help. Im sorry to be negative, I just feel hopeless.
Hello all…I have had back pain since I was 21 yrs old…now 40 and just diagnosed this past Dec..Mind you I had MANY visits to the Dr. for the pain. Never could find anything wrong..The other day I was at the Dr and while I was waiting I was leafing through my chart and found an xray report from 1999. I had fallen and fx my sacrum..well along with the fx on the report it said..evidence of sacroilitis and SI joint changes…1999!!! Hello! I can’t begin to tell you how badly this aggrevates me..Anyway…I am on Humira now and it has been a lifesaver..I feel lucky in that I am NOT always in constant pain and do not have to take any sort of pain meds. Anyway, just wanted to get my rant on!
Stand Tall!
Carla
Jessica, sounds like you have been run through the mill! I bet a lot of people who visit this site can understand what you’re talking about. I’m one of the founders of AJAS and what you’re going through is exactly why we created the nonprofit. Now, of course I don’t know which doctors you have tried and which you haven’t, but if you search on the Internet for this phrase ["ankylosing spondylitis" + "pain management" + "Long Island"] (without the brackets) you will get a bunch of doctors and clinics right in your area who specialize in what you need.
Have you tried acupuncture or yoga? Many have found these therapies to be helpful in dealing with their pain. AS symptoms usually get better with exercise, so yoga might help on many levels.
Here are a couple of web sites for you to check out that talk about some of the newest developments on pain management being used by AS patients:
http://pn.psychiatryonline.org/content/46/11/19.full
http://www.cigna.com/healthinfo/aa106305.html#aa106305-sec
http://www.spondylitis.org/about/exercise_posture.aspx
Check back in and let us know how you’re doing!
I was diagosed with as last year. Aftr having constant pain in my hips and buttocks for over 10 years. I went to so many difrent types of drs and got no answers or relief. The pain at times was so excruciating that i had 2 go 2 emergency room on difrent occasions.finally last year i went to an arthritis and pain management dr who had me a blood test to check for the hbl 27 marker. I test positive. Nowadays my treatment consists of arthrotec, injections, chiropractic and pain pills.i hav good days and hav bad days. Im 32 years old
Hi There,
I was diagnosed in 1990 at the age of 28, so some time ago. I consider myself fortunate that I was keen on running in the early 80′s due to being in the R.A.F.
This sport has kept me mobile. But on days like today when my hips are so sore i am limping around it’s a case of a waiting game as i know my A/S comes and goes in the day time but is blooming impossible to sleep at night without anti-inflammatorys, pain killers etc. this I have been taking every day for 21 years. So I hope that we may all find some suitable exercise to combat this horrible condition.Take care all.
Another good Ankylosing Spondylitis “chat” site is answers.ankylosing.org. It’s a good online Q&A support community for discussing AS symptoms, treatment, medications, diet, research, etc.
I’m a 38 year old male, I was diagnosed with AS last year after ten years of constant pain and occasional uveitis. I’m HLA-B27 positive.
I’d just like to say don’t discount the Norman Cousins story out of hand. I am convinced there is also a psychological aspect to AS, especially the pain. The reason I know is that 3 months ago I read a book calling Healing Back Pain by Dr John Sarno which deals with chronic back pain (called TMS). I have been pain-free ever since. I still feel stiffness and an occasional ache but not even at the level were I would take a painkiller. Before this I had never had a pain free day in ten years. Good luck everyone.
i have AS
i am 15 and was diagnosed 4 months ago, its so painful, i cant really do any physical activities which is upsetting as i love sports and was part of a cross country team before 
its soo hard to sleep at night, im on strong tablets and i swear they just do NOTHING! but i cant have stronger ones because of my age, i have hydrotherapy but the pain after it is unbareable, most people are shocked because i have this at such a young age :/
I have read all your stories and can relate to all of you. This is like an invisible disease and I have bad days and really bads..never good days. I am 46 and was very physically active…now I can’t drive…have had both hips replaced and am on Embrel which I am not sure is working.
im 48 was diagnosed 5 years ago.had back pain/problems my whole life went thru about 15 docs b4 one finaly found out the truth.i tested positive for hlba-27.enbrel killed me the paramedics brought me back.when your on it you have no immunity.i caught bacterial pnemonia and encefilitis at the same time.my neck and back are fused.im still working but take alot of sick time.the pain is unreal.i pray for all of us that have this terrible disease.stand tall and keep fighting.
I’m 52 years old and have lived with AS now for 35 years(diagnosed by an excellent orthopedic surgeon when I was 19. Never been operated on for AS). I can remember the exact day it struck: the morning of my last HS basketball game my senior year at age 17. I was an honorable mention all-state player. When I went to bed the night before I was in the greatest physical shape of my life. When I awoke, I could barely get out of bed or walk.
The Oregonian newspaper published a commentary of mine( Living With The Pain) on March 13, 2005. You might find it in their archives or at OregonLive. It was about living with this disease and what it is to be on pain medication.
I am a part-time writer and am currently writing about what it is to live with AS. Let’s face it-physical pain from AS is only half the battle. I know what it was like to hear people say he can play basketball(in my 20′s), but he can’t make it into work. But no one ever saw me take 5 minutes to get out of the car when I got home, make it to my recliner, and the day was over.
No one ever saw, when I felt the sneeze coming on, that the tears would make it down my cheeks before I ever sneezed, because I knew how bad it was going to hurt. No one ever saw. Because we often don’t want them to see. We often suffer alone.
Hang in there people. Find a doctor who has compassion, like I have, not one who expects you to be tough. Because we’re already tough. Believe me, If you live with AS, you’re tougher than nails. I don’t care what meds you’re on or not. It’s not about being macho. It’s about living with less pain. It’s about quality of life.
May God bless you all.