A.S. Faces Goes Global

If only for a moment in time, we can say that

we made The Faces of Ankylosing Spondylitis a global word.
Thank you so much Micki Hogan and Digital journal

for honoring the Ankylosing Spondylitis community today.

We Did It and Here is our story!

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

By Micki Hogan

Sep 15, 2013
By Micki Hogan.

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!

Read more:  http://digitaljournal.com/article/358418#ixzz2f5Naqwa0

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