A Face, Your Face Is Wanted : Information Here

Our goal is to have ONE THOUSAND faces… There is strength in numbers.

To be included please contact Cookie at  Cookiehasas@aol.com    We are also on twitter. @FacesofAS

The requirements  to have your face included on this site are:

You must include your name and location.

You must have  Ankylosing Spondylitis.

You must include a picture of yourself.

You are welcome to provide only a picture, many pictures or a picture along with a story, poem, quote, whatever you wish to share about your life with Ankylosing Spondylitis.

This project doesn’t have a deadline and you are free to add or update anytime you wish.

Please send your information to email address Cookiehasas@aol.com

I appreciate each and every one of you. Thank you. Sincerely Cookie


80 Responses to “A Face, Your Face Is Wanted : Information Here”

  1. I have had A.S. since 1983 and am going strong.I decided to go back to school in 2010 at the age of 49. I am now 50 and still doing it.

  2. I have had A. S. since 1983 when I was first going to school. Now it is yearly 30 years later and I am going to college once again.

  3. Hi I got diagnoised only a year ago I’m finding it hard but love and support I get from other as suffers is imense

  4. Please share this great site on your facebook wall.. understanding will go a long way.

  5. Hi there!

    I was diagnosed with AS nine years ago, I was 29. I had a baby in June and I’m happier than I’ve ever been before. Sites like yours help a lot in everyday life, because we have to be strong!

  6. hi

  7. i dont know how do it..i send mail to blog but i can’t upload a photo!

  8. OK dear

    Thank you

  9. I have sent my story via email.. cookie aint I a wally lol…. x

  10. Hi Cookie

    I have sent you an email / story / photo, I hope you will publish.

    Regards
    Audrey

  11. I was diagnosed with AS about year ago. Feels good to know that I do have something and not going crazy. With websites like yours it helps us all to Stand Taller each day.

  12. i was told i have AS in 1981

  13. i was told i have AS back in 1981 an never look back at this horible thing they call ankylosing spondulitis

  14. Jacquie from AZ… AS hurts my body, my heart (for real), my family and my smile!

  15. I think I’ve had AS since I was a teen… diagnosed with bursitis in my hips, had on and off lower back pain/hip/knee/ankle pain for years. My brother has had AS since his 20s but no one thought girls would get it. In 2006, I was hit was Uveitis. The thought of losing my eyesight was worse than any backache I ever had. After 6 mos of re-flaring, I was referred to a rheumatologist…. so here I am 56, still working real estate and managing life reasonably but miss skiing and walking soooo much… No uveitis for over 2 years so everyday is a good day, even when I’m slow, i can see!

  16. i was told in 1981 that i had this horible an invisable disease iv met some great friends on here that help me through day in day out cos trust me its hard an geting harder as the years go on

  17. When I was about 10 my mother went to the hospital with such pain in her joints–mostly her knees ..doctors took a very long time diagnosing her with AS Because it was so uncommon and usually found in males..by the time I was in junior high I too had painf joints and bloodwork showed I had the marker..when i was in my early twenties after three doctors I was finally diagnosed with AS.a disease so unpredictable and sporadic..i can go moths without a flareup and any joint is a candidate

  18. I was just diagnosed with AS this past summer. I have the genetic marker for it. There is no family history of anyone having AS. My first cousin has RA and many in my family have OA. So glad to find this site and other sufferers of AS!

  19. My story is too long to post so to make a long story short: I was diagnosed with spondylosis at the age of 20 after years of dealing with sciatic nerve pain/issues, IBS and my first of 6 uveitis attacks. At the age of 30 I was diagnosed with Crohn’s disease and at 35 I had an attack of Pericarditis. It wasn’t until I saw an episode of Mystery Diagnosis where a man had the same exact issues I had (minus the Pericarditis). I thought for sure he had Crohn’s disease (since this was the diagnosis they claimed was the key to ALL my issues). During that episode they said the only way to know if you actually had AS was to be tested for the HLA-b27 gene. So in May of 2011 I tested positive. I have not been offically diagnosed with AS via an MRI or CAT Scan only because I have no insurance, no job and can not afford to have these test ran: However, my doctor is pretty postive I have AS.

    The more I learn about AS the more convinced I am that this “is” what I have. I love reading about others who have this same issues and what they do to cope. This is a great website and I’m so happy to add a face to this site.

  20. I was diagnosed with AS 8 years ago, but my PT thinks I’ve had it since I was 13. Please visit my website http://www.ucandoyoga.com to read about my journey to becoming a yoga teacher. All of my students deal with serious physical challenges. I am 60 years old and am currently in school to get a masters degree in whole food nutrition.

  21. I have just found this web site and i must say i like it . i thought i was a lone with A.S but now i know I`m not now thanks too your web site i have had A.S since i was 17now i`m 60 you seem to have a family feel & i would like to join this special family like group if i may .

    • Hello Peter,
      Welcome! So glad you found us! As far as I am concerned you are already a part of us! We would be honored to add your picture with or without your story to the site.
      The mailing address is Cookiehasas@aol.com

      Pleasuse to meet you!

      Sincerely Cookie

  22. Right i will as soon as i can it may sound silly but i`m not very good with computers just yet still learning but i`m on to it .

  23. Right i hope i have managed to get it right if not can you let me know thanks still not sure if i `m gettting things right i`m going in to hospital today for surgery on my left hand already had my right hand done two hip replaced the joy of A.S so a bit nervous & being in plaster for 8 weeks not looking forword to that one bit. & can not even go to my local hospital in Oldham Greater Manchester have to go to one in manchester it self which is a long way from my home let you all now how i get on bye for now Peter x

  24. I am diagnosed AS since 1980 at the age of 16, now i am suffering from IBD, frequent Uveitis, severe chest/costal , Hip joint, Back and ankle joint pain with inflamation. Under NSID , Methotrexate and Mesalamine and doxycycline. Hoping to get better..

  25. Hi Cookie – Just came across your project on Twitter and love what you are doing for the A.S. community. My own 1000faces work is far less focused. To you and all who have contributed, nicely done.

  26. I have had “AS” since I came home from Viet Nam, in 1971.
    I was 22 when I first had the symptoms. I am now 63, My
    body is frozen in place. From my head to my feet. I can’t
    turn my head. I can’t raise my head. My legs are so weak
    I can’t walk more than 20 feet and I have to sit and rest.
    This is a deabilitating desease. Also it humiliates those of
    us who have it. How sad, I also passed this desease on to
    my youngest son. At my age I am just trying to make the best
    of everything. Thank God I have the Lord.
    If anyone has any questions, I would gladly answer them for you
    as I have lived with this all my adult life.
    Gary Hester

  27. Hello everyone! I’m so glad I found a page that connects me to all of you that are going through what I am! I’m 22, a nursing student, and a single mom of 2. I never thought in a billion years that I would have a disease such as this one. My symptoms started about 2 years ago and I never really thought much of them, that is until my leg had completely given out on me while walking a few steps from my house to my shed. It took months for doctors to finally figure out what it was. I went from one doctor saying that it was normal and I should try not to as much weight on one leg?! The orthopedic thinking it was a herniated disc. Another orthopedic telling me that my spine looked like it had a defect in it. And finally my rheumatologist who first thought it was rheumatoid, but then my rheumatoid factor was negative and I had the HBLA-27, so the final verdict seronegative spondyloarthropathy. My treatment plan is plaquenil and naproxen twice a day and lortab as needed. I am always in constant pain, my feet and legs swell while I’m at work or in class. I work for the bank as a proof operator, and that means I type for my money, so that is making my fingers worse. I can’t sit for long periods of time because it hurts so bad. I can’t wear pretty high heels, can’t go out dancing, can’t have a drink or two because it makes me sick. I’m almost always late to anywhere that I go. I can’t focus on things, I’m always tired and groggy. I hate feeling this way at my age and sometimes I wish it would just all disappear, but I know that will never happen bc what the arthritis has already ate away is gone for good and the damage is done. But all we can do is stay strong right? Just thought I would share my story with you all, and if anyone is on the same meds as I, I would like to know how they are working for you :). Best wishes to you all, enjoy your good days and have strength on the bad ones.

  28. correction…. HLA-B27, and I’d also like to add that its so tough on my children who are 2 & 4, and they want me to hold them, or jump on the trampoline with them and I just can’t. 😦

  29. Hi, I just want to know if somebody in the group suffers from AS and Multiple Sclerosis at the same time…. I have both of them.. and the regular treatments for AS are not recommend in my case… So I am getting worse really fast.
    I appreciate any advise … I really need help!!!!!
    Thanks for everything.

  30. Hey everyone. I am 34 years old and been fighting AS for 10 years and unfortunately I am loseing. I have done the meds and treatments, but my spinal curvature has gotten so severe that surgery is my only option. I am hoping to find someone who has done that step and might be willing to share bits of there experience . Thank you everyone.

  31. Cookie, I sent mine in several months ago… Is it ok?

    • I haven’t been able to find it. Sometimes mail goes to my spam folder and deleted I have changed the settings. When you have time please resend Sincerely cookie

  32. Before they finely found I has AS, I was treated like I was a lier, was took on a crazy bus ride over corners he drove like he was going to a fire sent me into a lot of pain, rudeness from a mental doc, was asked if I wanted a breast reducion from my reg. doc, which she was just being a smart a**. had a test done elec. on muscles, when out side to sit and was told I was a lier. Finely it showed up on x ray, my rheumy perscribed me a muscle relaxer and when it was time to refill it he said, already! Its really had to hold respect when no one is giving you any. I was dropped from pt. because I couldn’t do what they wanted that day, my knees were killing me. I knew something was wrong years ago and knew it would show up sooner or later, they found mine at the age of 53, thats a long time wonder if it was there and they just didn’t tell me.

  33. I was finally diagnosed with AS at the age of 33 last year after years of testing. I had to quit working, but I am better able to enjoy my family.

  34. For a few years, I had lower back pain and sciatic nerve pain. For about 8 years, some of these years during the back pain, I had chronic iritis about once a year. Finally, a doctor made the connection that it could be related to something else, and had me go to an eye specialist. The eye specialist did blood work, X-Ray, and MRI which all concluded that I had A.S. The diagnosis was in September or October 2007. I was then put on Enbrel. I’m 36 now. As long as I use Enbrel, I have very little pain from A.S. I’m excited to find as many websites as I can devoted to A.S., so that I can read about other patients’ experiences.

  35. I submitted all my info a couple weeks ago and still haven’t heard back from anyone?

  36. I have had AS and have been in pain since I can remember. My mother says I’m the only four year old she’s ever heard of who needed Bengay cream at night! I’m nearly 19 now, and my mother has AS, too. Her father also had it, and killed himself.

  37. […] World AS Day, Walk Your AS Off, become a face https://thefacesofankylosingspondylitis.com/a-face-your-face-is-wanted-information-here/ […]

  38. I just recently found out that I have A.S. I have had pain for years now and now I know why. I’m still in the new stages of knowing and I’m very scared.

  39. I submitted my information, i hope i can have my story shown and be able to support me and everyone else with A.S with a braclet. Thank you -Tracie

  40. We’re here for you, if not in body then certainly in spirit!

  41. Hi, my name is Marie Hall. I live in Sun Valley, ID. I was diagnosed with AS when I was only 16 years old. Over the years various physicians “undiagnosed” me without any tests, others agreed on the diagnosis. I did pretty well for a while but the last few years have been a struggle. At this point I had to give up my nursing career and work a minimum wage job from home. I also suffer from degenerative disc disease and have nerve damage, so I don’t get out that often anymore. I’m 34 but not giving up yet.

    • Hi Marie. I was just recently diagnosed with AS 2 1/2 yrs ago. I was 43. I am also a nurse. I am sorry you had to leave the nursing field. I worked in a busy ER for 14 yrs absolutely loved it. After my symptoms started I spent a year suffering through the anguish of standing over a bedside hussling my bottom and just trying to be compassionate. i found it harder and harder to be the nurse with compassion when I was apparently in more agony than my patients (not that I ever wanted to feel that way but it does go through your head fighting your own pain) Eventually I realized I was becoming that nurse I didn’t want to be. I moved to the ICU . Not any better though I found my compassion again, my pain did not subside. I recently gave my notice because I didn’t feel it fair to anyone that I couldn’t be the nurse I want to be. Just standing at a bedside for 5 minutes gives me severe hip and low back pain, then all I can think of is sitting down. To make a long story shorter, I have a new rheumatologist and hope they can control this better so I can continue doing what I love to do. I was very active prior to this: horse back riding and anything outdoors even cutting our winters wood. I am so glad I found this site.

  42. Saying positive after 18 years with AS and five surgeries

  43. Wow. So much of this AS starts out at a young age. I was diagnosed 2 1/2 yrs ago. I apparently am not typical. I was 43 when I was diagnosed but can’t help but wonder if chronic stomach problems low back pain as a teen was this slowly showing up. When I was diagnosed, I was working as an RN in an emergency room. I developed severe abdominal pain and was treated. Saw my primary scheduled for scopes and that was that. A week later I developed what I thought was conjunctivitis. Went to see my primary who had me see an optometrist and was asked all these crazy questions about rashes, joint pain back pain. My diagnosis Uvitis. They had tons of blood work done and referred to to a rheumaologist who started me with methotrexate and another med. It didn’t help. I was fighting visual problems the joint pain started in my knees hips and back. After a year and a half of no relief from my vision problems and my joint pain, I called around for a second opinion. That’s when a new specailist diagnosed me with AS, and of course fibromyagia. I started Humera and kept on a lower dose of methotrexate. I am still suffering from joint pain fatigue and have had planned on speaking with him about where to go from here. I cant stand for 5 minutes before my hips and low back becomes severe. He cancelled my appointment and didn’t know when they could reschedule and topping it of “he is leaving” Yikes. Now what do I do. Persistent complaining to my primary because the referral she gave me is in Dec, got me an earlier appointment. I am just hopeful this can be controlled better so I can continue my nursing career. I have terminated my employment at a busy hospital for the smaller hospital where it is more relaxed…but I loved the high pace job I had. When I think of never being able to do it again, my heart becomes heavy. Even as a nurse I can not comprehend not having better control of this.

  44. Hi I am new to this blog I am wondering how to get a wrist band and what day we use for AS I have 5 autoimmune diseases with chronic pain so trying to help all of them

  45. Sadly, I must report that Dana R. Spencer, 0703, passed away on October 28, 2013. He appreciated the opportunity to post his story on this site, and my heart goes out to all of you who suffer from this devastating disease. Thank you, Cookie, for allowing all of the wonderful Faces on this blog to tell the world who they are. Marilyn (Dana’s wife)

  46. Hi Cookie , I have been fighting AS and dystonia now for four years , I just found out what I have . I will keep fighting till there is a cure !!! I am going to John Hopkins and the doctors are very nice and has helped me a lot . My husband and family are my ROCK I would not have came this far with them . I walk on my ankle and my right foot is twisted and use a walker or wheel chair my spine is fusing and I have pain in my lower back and butt cheeks. I do take pain meds and they make me loopy and tired all the time . My dr took my driver license from me me because of my right foot . My family helps me so much !!!! And my church going to church helps me with my pain !!! I just want to let you know THANK YOU for the AS site it is great that so many great people can vent and talk about are problems . WARM HUGS !!!!!!

  47. Hi i sent my pic an story i havent had a reply an am not seen as a face of a.s yet was just wondering wen its going up with they others thanx xx

  48. Hello I was diagnosed 2003 with A/S and Rheumatoid arthritis. This past Dec. I had one of my hips relpaced and during that
    time I had stopped taking the Humira, inturn caused my A/S to beat me down. I didn’t think I was going to make it for a while until hope arrived in the form of a friend who has an illness herself. Throughout that time she proved to me it can and will be done! I couldn’t imagine going through anything like this alone. The Faces of A/S has shown that nobody is alone!
    P.S. Cookie I’m in need of a wristband perhaps a T-shirt. “Please and Thank you!”

  49. I am 24 year old.I have ankylosing spondylitis since 2007.till last year,only lower back was affected.but since last December,my right leg also got affected with inflammation in pelvic bone,knee also.I have to quit my job as I am struggling while walking and even struggling to get up from bad cause of right leg.I hope if there is any light at the end of the tunnel as I am only 24 years old and this disease has completely taken me down.

  50. I was finally diagnosed in 2012. I am 32 with 2 daughters 8 and 11 they are very understanding and supportive of my condition. They are why I fight my pain so hard. My 11 year old was positively diagnosed in April she had all the blood work, MRI and xrays to diagnose her. So we are each others support system. After years of being misdiagnosed when I was finally diagnosed I felt so alone many people didn’t believe I had the disease and some would just say look how young you are what til your my age or my favorite just ignore that there is anything wrong with me.

  51. Hi I am having AS for past 7 years….I am from india……now I am 24 years old…..I am studying mbbs and going to be a doctor soon….wants to study rheumatalogy in post graduate…..an AS sufferer only understands its cruel face….wants to join in this group, don’t understand how….join me please…

  52. Hello! I have had AS since I was about 13. I am now 54, and have was finally diagnosed about ten years ago. I loved my career as an Executive Assistant. It was a challenging career and I guess IT was in my genes as well, lol, since I do like to help people and found it to be personally challenging and I like to help people. I unfortunately had to go on disability since I was physically unable to handle my job consistently well to the best og my abilities. It’s difficult to always be in pain and be on top of everything. Just lately, I’ve found an AS website that is great! They help everyone mentally and are there to answer medical questions. It’s been s Godsend!

  53. hello cookie, how are you my nice kind friend?

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