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Op-Ed: Faces of Ankylosing Spondylitis reaches its goal of 1000 faces Special

By Micki Hogan     Sep 15, 2013 in Health
A devoted advocate reaches her goal of 1000 faces on her website called Faces of Ankylosing Spondylitis. Each face, including her own, battles the unknown invisible illness. Through advocacy Cookie Hopper brings global attention to the disease.
Cookie Hopper's devotion to raise awareness for the little known disease Ankylosing Spondylitis has lead her on a path that inspires others. She recently reached a goal of 1000 faces on her website titled The Faces of Ankylosing Spondylitis. This week she reached her goal of 1000 patients diagnosed with Ankylosing Spondilitis featured on her website.
Ankylosing Spondylitis is an autoimmune disease that effects primarily the joints and spine. It causes the immune system to react differently than the average immune system. In short an immune system of an AS patient “thinks” healthy cells are ill and the immune system attempts to repair healthy cells while it is actually damaging the cells. The disease also effects the heart, eyes, and many other vital organs. Flare ups are often unpredictable and the patient may never know which part of the body will be affected or how long the flare up can last. The disease is chronic and creates extreme chronic pain and fatigue. Often the spine of a patient will become fused as the immune system contiues to attack the spine, commonly known as a bamboo spine.There currently is no known cure and it is the hope of advocates like Cookie Hopper that one day that fact will change.
Cookie Hopper not only is an advocate for awareness of Ankylosing Spondylitis but also a patient battling the disease. She was diagnosed with the autoimmune disease after nearly 30 years of pain. She was diagnosed in 2002. She was 43. Her first symptoms began at the young age of 12. As any patient will tell you that it often takes years for the proper diagnosis because the disease is not well known and hard to diagnosis. Currently Cookie has a completely fused spine , and doing well on Remicade, a biologic treatment,, and has been blessed with an amazing medical team, AS family, and family. She now inspires other patients to remain strong and reminds many daily they are not alone.
It is Cookie's hope that through awareness and research one day a cure may be discovered. When she began her journey it was a time when autoimmune diseases were often misunderstood. Patients inculding Cookie began to use social media websites to reach out to other patients. Slowly a network began to form. Patients who often felt alone soon began to realize that others suffered from the same disease. They learned through networking often unanswered questions and feelings could be shared. One member of the support group that stood out to Cookie was Stuart, a young man she met while on the Spondylitis Association of America Support forum.
Stuart's story reached Cookie's heart. Through the forum she learned they shared similar struggles and her empathy for him soon became the driving force of the 1000 faces of AS project. Cookie wanted to created a website that not only created awareness of the disease but also created a safe harbor for fellow sufferers of the chronic disease.
I wanted people with Ankylosing Spondylitis to have a place where they are honored for having the courage to share their lives with us. I wanted people to understand that this disease isn’t just about Ankylosing Spondylitis, it’s about destruction of lives and the courage to fight for a life of quality and the Hope to continue to live the best life that you are able to and finding the faith to do so. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.
My vision was to create a place where people could be honest about their lives with A.S. and where our community could honor our challenging lives. A place where those who suffer with A.S. know someone cares, where we know we are not alone because we are in this together.
Another person Cookie became aware of online was Sara Frankl, an AS patient who had also reached out through social media to share her thoughts and her story to other patients of the disease. Her story and blogs were read by many and her story spread through the media sites. Her compassion and strength also gave Cookie the courage to step forward with her own personal mission of awareness.
When asked about what inspired the 1000 faces of Ankylosing Spondylitis project Cookie said
One evening I decided to write a thank you post to those who work tirelessly despite their pain and struggles of Ankylosing Spondylitis to raise awareness. I wanted to remind them the reason that they work so hard, was for the Stuart’s and the Sara’s of our community. The post ended up causing the opposite effect that I had desired and people became very upset over it.
Because of that one post, I became aware that we and the world needed to see our reality, the good, the bad and the ugly, but most of all the beauty and the hope of our community.
It is a fact that often invisible illnesses are often misunderstood. While an autoimmune patient make look healthy on the outside often they endure extreme pain, unexpected flare ups and weakended immune systems. A person who has never experienced an autoimmune disease may not understand how difficult day to day life can be for people who battle diseases like Ankylosing Spomdylittis, Rhuemitiod Arthittis, or Chrons.
Cookie began her mission October 8, 2011. She made a personal goal to highlight 1000 faces/people diagnosed with Ankylosing Spondylitis. Over the years word spread of her project and on September 16, 2013 Cookie reached her goal by featuring the thousand face on her website.
Her project included 671 women, 329 men, and 24 youths. Many were astonished to learn that the majority of the patients were women as the disease is commonly known as a male disease. Most will say that males are affected by the disease more than females. Ironically this is not the case through the course of this project.
The fact how the disease also effects the younger generation was put to the test as well. Commonly, the disease begins it's onset of symptoms in the late twenties or early thirties. The youngest faces are two beautiful girls Louisa,( face 0950) who is five and Maddy ( Face 0555) who is almost six now, both were diagnosed at the age of five.
When asked of her advocacy plans for the future Cookie responded by saying
My dream is to start a non profit foundation called H.O.P.E (Helping Other People Everywhere) were people would be able to get assistance for living expenses, food, medical treatment and medicines. I plan to continue to work and grow the Faces of Ankylosing Spondylitis Information board, in hopes one day people will be able to locate the information needed to provide a better quality of life
You can read of her goals here The Faces of AS
When asked what Cookie has learned during the course of the project, Cookie answered candidly and shared this message of hope.
I personally have learned how amazing beautiful, strong and resilient the human spirit really is. Be your own advocate and fight for a better quality of life, because you are worth it, and don’t you ever forget that.
When asked about her thoughts and feelings now that the project is nearing its end, she responded with fire and spunk!
Who said it was going to end? I just met my personal goal of 1000, now on to 2700. Honestly I never thought the day would come I would post Face 1000. It has been one of the greatest blessings of my life, to be entrusted with such personal stories and to make something beautiful and positive out of something that has been so devastating for others, to know that I have been able to touch someone’s life is to indescribable for words
The Faces of AS website is a place where people could be honest about their lives with A.S. and where our community could honor our challenging lives. A place where those who suffer with A.S. know someone cares, where we know we are not alone because we are in this together.
It’s time we take a stronger stance in bringing more awareness, research and funds to our battle against Ankylosing Spondylitis. I want to take this opportunity to thank the Spondylitis Association of America, and all the individuals who have helped me along the way. Their work and determination to make a difference in the AS community will never be forgotten.
Cookie is an inspiration to so many patients of an auto immune disease. Her story is only beginning. As we watch her advocacy grow, one has to wonder what she may have up her sleeve next. Until then we salute you, Cookie Hopper! You are amazing!
This opinion article was written by an independent writer. The opinions and views expressed herein are those of the author and are not necessarily intended to reflect those of
More about Ankylosing spondylitis, cookie hopper, Ankylosing spondylitis awareness project, american association of spondylitis, invisible illness
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