Making the World Aware of Spondylitis Arthritis

Posted May 01, 2012 by


Spondylitis affects 2.7 million people in the U.S.

Elin Aslanyan is determined to make spondylitis a household name, even if it means teaching people one at a time how to pronounce it. She started by educating us on the disease last week after we spotted her action on Causes.com to raise funds for her organization, the Spondylitis Association of America (SAA), and its mission to spread the word on the disease.

Spondylitis is arthritis of the spine and it affects over 2.7 million adults in the U.S. Although more Americans suffer from the disease than people affected by multiple sclerosis, cystic fibrosis, and Lou Gherig’s disease combined, spondylitis is relatively unknown to the general public. “It’s primarily a young person’s disease that is hard to diagnose, and there is no cure,” Elin said. She’s making it her mission, along with the support of her organization, to change all of that.

Elin and her organization came across Causes.com after users on our website made donations to the organization. Soon, she was psyched to try Causes for herself and told us, “It is the perfect platform to access a social network outside of your primary community.”


Elin Aslanyan created an action to raise money for Spondylitis awareness.

Elin created a fundraising action to raise $1,000 for the creation and distribution of 500 copies of Spondylitis Plus, a magazine with all the goodies you need to bulk up on spondylitis facts. This will lead to better care and better quality of life for those suffering from the illness. Usually, medical professionals and the general public don’t have spondylitis on their radar; that leads to unanswered questions, missed diagnoses, and doctors with little information to provide patients.

One critical problem for spondylitis advocates is the abundance of misinformation. Drinking prune juice lately? It’s probably not going to make you better. The only way to alleviate the gap between real information and the fake stuff is to educate everyone. “We really want people to see the brochure, read it, and then remember the disease. Or maybe we can get patients who are diagnosed to take the brochure to their local medical facility to help educate other patients.”

A major social media campaign involving tweeting and Facebook updates targeted at the spondylitis community translated into over $1,000 raised in just over two weeks. Without hesitation, Elin cranked her goal up to $2,000. On April 25, Elin updated the spondylitis community with great news: the SAA give campaign surpassed the $2,000 goal! The donations mean 1,000 doctor’s offices across the country will receive spondylitis information. Elin’s pursuit to make you and me aware of spinal arthritis is on track!

Elin is eager to create additional actions on the Causes’ platform, like asking people to pledge to spread facts about spondylitis and maybe polling new members about what age group is the most afflicted. Whatever the case, every one of Elin’s actions will have one invaluable goal at its core: educate everyone about spondylitis. We wish her success!

Visit Elin’s cause page and learn more about spondylitis and what you can do to provide a helping hand.

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  • Ted

    Neat.

    • Alejandro De La Cruz

      Indeed!

    • Lissi Kistensen

      Er selv ramt af: Skoliose
      Diskusprolaps
      Diskusdegenerationer
      balance problemer
      lændesmerter
      spondylosis deformans
      fint der er nogen der tager det op

  • Wincent Colaiuta

    I really like seeing how an individual can magnify their impact like this using the internet.

  • James At Causes

    Congratulations to Elin for running such a successful campaign! Happy to see such awesome organizers using Causes!

    • Elin Aslanyan

      Thank you so much, James! Your tech support made it possible for us to do this.

  • http://www.facebook.com/people/Matt-Mahan/828 <fb:name linked="false" useyou="false" uid="828">Matt Mahan</fb:name>

    Congratulations on your successful campaign, Elin! It’s inspiring to see passionate individuals do so much good. Keep up the good work. I hope to hear an update on your cause again soon!

  • Rocky Beach

    Great story. This is a very painful type of arthritis. Thank you for leading this campaign Elin!

  • Melissa Pak

    Good job, Elin!

  • http://www.spondylitis.org Elin Aslanyan

    Thank you, Causes for that wonderful post about SAA’s Spondylitis Awareness Project!! We are thrilled and humbled by all the support we’ve gotten, and this post was the awesome icing on the cake ( : Thank you! We have indeed reached and surpassed our goal, and will be sending our news magazine to OVER 1,000 doctors.

    This project was the brainchild of three of us here at SAA – Diann Peterson, Chris Miller, and myself and we each played an integral role. This would not have been possible without the support of our colleagues at SAA, and of course our amazing Spondylitis Community! – They are the reason we do what we do.

    Thank you, Causes for spreading awareness with us and telling people about spondylitis through your post! This truly is a disease that needs all the attention & awareness it can get.

    Special thanks to Alejandro and James!! You’ve been wonderful to work with.

    • James At Causes

      Thank you Elin, the feeling is mutual. Such a pleasure to work with you! Glad to help out your cause and raise awareness.

  • Sharon

    I have had spondylitis is just one of my spinal problems for almost 10 yrs. Never even heard of anything like it . It is painful limits your mobility and does not get better. Most people have no ideal what
    you are talking about when you say spondylitis , it not only affects the area but causes other issuses as well . I am so glad someone is making others aware .

    • Alejandro De La Cruz

      Thanks for your comments, Sharon.

    • Stan

      Sharon, When I was told about 11 years Ago I had AS, I could not even say it. But as the years went on, The pain just grows, and very few people understand or even know what people with this go through on a daily basis. And when you have no medical coverage you live with the pain, and hope you have a so what good day with little pain as posible. More people need to know about this.

  • Mel Dowler

    Thanks Elin for raising awareness As a long time sufferer myself who was repeated misdiagnosed I admire you for trying to do something positive. xx

  • Beatriz Aranda

    Mi hijo tiene espondilitis cualquier información de tratamientos sería muy importante y de utilidad.
    Vivimos en México. Gracias.

    • Alejandro De La Cruz

      Muchísimas gracias por los commentarios, Beatriz.

  • http://www.facebook.com/people/Susan-Gordon/501438 <fb:name linked="false" useyou="false" uid="501438">Susan Gordon</fb:name>

    Very cool story – esp how she used technology to reach a wider audience on a very specific, important issue. Good lessons for all of us!

  • http://spondylitus ann mcaloon

    i have had this since i was 32yrs of age and its awful decease ,they said it was caused through my nursing career lifting manually elderly patients ,have you any tips on relief your s ann

  • Joan knight

    My mom suffered (and i mean suffered) with anchilosing ? Spondylitis, its an awful form of arhtritis.

  • Randee

    I have this! I just had surgery 2 weeks ago, Cervical Disc Replacement. I’ve refused bone fusion for years & waited till this surgery had some track record. So far, so good.
    I am starting to have problems in the thoracic areas, and have had lumbar troubles from an old injury… Dr. said 1 thing at a time, lol!
    Thank You for this! People and Dr.s need more awareness.
    Sincerely, Randee

  • Diane

    Thank you so much for raising public awareness to this painful, debilitating condition. God bless the work you do. May you have much success.

  • Ana Lorrah

    Thank You Elin for your diligence and hard work spreading awareness about Spondylitis…it is so rewarding to know one person can make such a difference…you have inspired me to become more proactive in educating people about what ails me. I was diagnosed three years ago with Ankylosing Spondylitis after many, many years of suffering and being led to believe it was all in my mind. I applaud you for shining a light on a very dark subject!!!

  • http://thefacesofankylosingspondylitis.com Cookie

    Wonderful job! Keep up the great work.

    Sincerely Cookie

  • http://www.Spondyville.com Michael Smith

    Way to go Elin!! Great job!! … Chris and Diann too!! Bravo SAA!

  • http://www.spondylitis.org Elin Aslanyan

    Thank you everyone for your kind comments of encouragement and congratulations! This was our first time utilizing Causes for a project of our own and needless to say it won’t be our last! ( : It’s a great platform and we’re thrilled with the outcome.

    MY congratulations to the Spondylitis Community for coming together and showing such support. Please don’t hesitate to let us at SAA know if we can be of help with anything! We’re here for our members and constituents. I’m not sure if it’s appropriate to leave links here, but you can find us pretty easily with a quick search.

    Many many thanks!!

    Elin
    Spondylitis Association of America

  • https://www.facebook.com/pages/ASAPAnkylosing-Spondylitis-Awareness-Project/209801168268 Kelly

    Yep, sure have heard of it..as I am afflicted with it..i started ASAP:Ankylosing Spondylitis Awareness project on Facebook with the same goals in mind..to support the SAA, to teach the general public what AS is and to support the AS community. I am so proud of the AS community for raising these funds. It is so nice to see employees of the SAA working hard to help us, as it is frustrating knowing no one knows about AS…that no one knows it afflicts men AND women, that is isnt mechanical issues like OA, but it is degenerative, it is autoimmune and inflammatory. It attacks the entire body..all joints, spine and organs! So any information put out there that is correct is good..we need all the help we can get!! Hurting, but Hopeful!

  • D

    One wonders how they can leave their mark someplace, for someone, or something at one time or another. Thank you for reminding some of us how to do so.

  • HollyZ143

    Elin, you ROCK. Thank you for all that you do for the Spondy community. I’ve made sure the rheumatologists in all of my doctors’ office buildings know how to order SAA brochures. But THIS is HUGE.

    I can only begin to imagine the impact it will have on those of us who need it most. I, and I am sure MANY others, thank you wholeheartedly.

    Please keep up the good work. And we, the spondy community, will continue supporting YOUR efforts to the best of our ability!

    By the way, it is nice to see your photo and put a face to a name. And a lovely face it is. Oh, and as I type this, I’m wearing my SAA Stand Tall wristband. ;-)

  • HollyZ143

    Elin, you ROCK. Thank you for all that you do for the Spondy community. I’ve made sure the rheumatologists in all of my doctors’ office buildings know how to order SAA brochures, once you showed me how.

    But THIS is HUGE.

    I can only begin to imagine the impact it will have on those of us who need it most. I, and I am sure MANY others, thank you wholeheartedly. Please keep up the good work. And we, the spondy community, will continue supporting YOUR efforts to the best of our ability!

    By the way, it is nice to see your photo and put a face to a name. And a lovely face it is. Oh, and as I type this, I’m wearing my SAA Stand Tall wristband. ;-)

  • Alejandro De La Cruz

    Thanks to everyone for sharing their stories on this page. And a big thanks to Elin for sharing her story. Like HollyZ143 says, you rock!

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