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
- A Face To Remember
- A Vision
- A Vision Begins With One Man’s Courage
- A.S. Face 0001: Kevin Andrews
- A.S. Has A Face
- A.S. Has A Name
- Home
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.
Dear Gregg,
How wonderful! I would love to add your “face” and story. I hope you will consider!
Sincerely Cookie
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.
Gregg, how wonderful! I hope you will consider submitting your story to us. Thank you so much!
Sincerely Cookie
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
Hello Louise,
I hope this site helps bring that to others to get support and love.
Sincerely Cookie
Please share this great site on your facebook wall.. understanding will go a long way.
Thank you so much Sweetie!
Sincerely Cookie
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!
Dear Marie,
We can’t wait to add you to the site! Best of luck!
Sincerely Cookie
hi
Hello Yiannis,
Pleasure to meet you, hope to see your face on the site soon.
Sincerely Cookie
i dont know how do it..i send mail to blog but i can’t upload a photo!
Dear Yiannis,
The site belongs to me, I am the only one who can add the stories and faces.
Please send your picture and story to Cookiehasas@aol.com and I will be happy to add you.
Thank you!
Sincerely Cookie
OK dear
Thank you
You are most welcome. Look forward to seeing you!
Cookie
I have sent my story via email.. cookie aint I a wally lol…. x
Dear Juie
You are simply wonderful! Was my pleasure.
Sincerely Cookie
Hi Cookie
I have sent you an email / story / photo, I hope you will publish.
Regards
Audrey
Thank you so much, Audrey, I am fixing to add you. I appreciate it so much.
Sincerely Cookie
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.
Dear Maura,
I understand how hard that is, we look forward to adding you to the site.
Sincerely Cookie
i was told i have AS in 1981
i was told i have AS back in 1981 an never look back at this horible thing they call ankylosing spondulitis
Jacquie from AZ… AS hurts my body, my heart (for real), my family and my smile!
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!
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
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
And i am also a female
Dear Shannon,
We would be honored to include you and your mother on our site.
Wishing you the best
Sincerely Cookie
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!
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.
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.
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
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 .
We look forward to it!
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
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..
Hello Sagar
I hope things get better for you and look forward to adding you to the site
Sincerely cookie
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.
Thank you so much Greg Pc! I look forward to adding you to the Faces site and seeing your project also. Thank you for the kind words.
Sincerely Cookie
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
Gary if you will send your information to Cookiehasas@aol.com I will be happy to add you to the site! Thank you
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.
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.
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.
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.
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
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.
It is hard to say. I think it is honestly just lack of knowledge in the medical fields. Best of luck to you.
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.
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.
I submitted all my info a couple weeks ago and still haven’t heard back from anyone?
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.
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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.
One day at a time sweetie, we are all here for you!
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
As soon as possible I will start adding again I have you saved !
We’re here for you, if not in body then certainly in spirit!
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.