I’d like to introduce you to a Rookie of the Year Finalist, and a Health Activist who has made a huge difference by “giving a face” to hundreds of people living with AS, Cookie Hopper of Faces of Ankylosing Spondylitis. Through her work in creating a site that focuses on giving patients living with Ankylosing Spondylitis the opportunity to share their stories, she has created a true community that has touched so many. There is really no better way to describe her project than how Cookie has, on her Vision page of Faces of AS (which you should read in full – it’s beautiful and gives some shout-outs to fellow AS Health Activists). Cookie writes, “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.” If that’s not a powerful testament to the power of community manifest in the online space – I don’t know what is. Congrats to Cookie on her many heartfelt nominations and the wonderful job she is doing for the AS community at large. It will be so exciting to watch Faces of AS continue to blossom. Cookie is giving so many hope with her community – if you haven’t yet, definitely check it out. Now – let’s learn more about her in her own words…
How did you become a Health Activist? Tell us your Health Activist story!
My name is Cookie and I have a disease called Ankylosing Spondylitis, it is an autoimmune arthritis. My symptoms began around the age of 12 and my diagnoses came at the age of 43. I was heartbreaking to be diagnosed with an “invisible disease”, but was devastating to learn that this disease was also “invisible” to the medical profession and the world I lived in. Six years after my diagnoses my doctor suggested joining the Spondylitis Association of America. Finally instead of being “invisible” I was upgraded to a shadow. I became friends with people who understood me and was inspired to do my part. I just wasn’t sure what my part in all of this was. I have always been a straight shooter and realistic person, so I knew whatever it was that I was going to do to make my life with Ankylosing Spondylitis have a purpose. It was going to be real. My inspiration came from the “Scar” project and a vision was born.
The reason I decided to make my vision a reality is because of two people. A young man by the name of Stuart was on our support forum. A bright young man who had his whole life ahead of him and lost his battle. A battle with Ankylosing Spondylitis that is often thought of as just a “bad back” He death, his pain and depression haunted me. I carried him inside of my heart thinking one day I will know what it is, that I am meant to do. Time passed and my life became full of other issues and then I came across a young girl by the name of Sara who was dying. She had ankylosing spondylitis and was under hospice care. I read her blogs, watched her change the world from inside her home, bedridden and knew that I wanted to make an impact as strong as she had. One day while speaking with Kevin Andrews he showed me a picture of himself. At that moment I knew the only way that people were ever going to take Ankylosing Spondylitis seriously was to understand the impact that this cruel invisible disease does to people. We suffer from the stigma of you don’t look sick, but also fall into the pitfall of I don’t feel that bad. I wanted people to know who was behind this invisible disease, who were living in pain, depression, isolation. I wanted people to understand what it is to live with a chronic disease and be invisible, even to the doctors treating you. I wanted to make sure that my lessons, hardships and understanding while living with this disease made a difference, in someone’s life. I am not out to change the world. I am out to change one person’s life and someone’s opinion of Ankylosing Spondylitis. I want to know that my life with this disease was not wasted.
What are your goals for 2012? Anything you’re really looking forward to?
My goal for 2012 is to have collected 1000 stories for http://thefacesofankylosingpsondylitis.com
I am working on a site that honors each of the stories in their own native language. http://internationalfacesofankylosingspondylitis.com
I am working on a website to help show the world that Anylosing Spondylitis is no longer a man’s disease http://ankylosingspondylitisasallsexes.wordpress.com
My dream is to be able to complete my personal mission of sending out 1000 wristbands uniting these brave and wonderful people who trusted me to be the guardian of their souls and share their stories.
I am working on showing that we are not alone and it is a small world after all. I have all the faces and support groups on a Google map. (Click here to see the map.)
I am working on a support board that offers information on doctors, medicines and assistance, by state. There are so many wonderful sites to get information but it is difficult to always find what you need close to you. http://thefacesofas.proboards.com
I have also set up two online stores to buy products for The Faces of Ankylosing Spondylitis. One store the profit will be donated to the SAA and research, the other is going to a fund being set up to help people who are approved for help with medical cost.
I started The Faces of Ankylosing Spondylitis on Oct. 8, 2011
My mission is to bring awareness to an invisible disease.
My hope was to put faces to the awareness ribbons.
My goal is to collect 1000 stories by World AS Day 2012
These are the steps that each face take when arriving at my door.
I put the Face on the page AS HAS A FACE
I then put the Face and story on a page Name then Number because it is important to me for us to not be a number.
I then put the Face and story on a page AS Face Number and Name to keep the amount collected in sight.
I then add the name to the Picture and put in a video page called AS Has A Name
I manually link each story to the previous story.
Then I make sure to put a comment on both pages.
Then I copy and paste the story to a website called.
http://ankylosingspondylitisasallsexes.wordpress.com Ankylosing Spondylitis =A.S.=All sexes
to show that AS is no longer a man’s disease.
I then add the story to the WEGO health blog and Daily Strength blog sites.
We are also on network blogs and blogspot and blogger.com
I then twitter the story @facesofas
Then I put it on our support forum http://thefacesofas.proboards.com
My goal is to list support groups, doctors and pain managements and information by states
I then put it on our FacesofAS Google map http://maps.google.com/maps/ms?msid=214105950539833975863.0004b192142abdcb13a1e&msa=0&ll=51.533007,-0.275919&spn=0.000908,0.002714
I have listed on the map each Face story, plus support groups, and crisis hotlines
I mail a link to every person so they are able to share their stories with everyone.
I then post the story of Facebook on the ASAP page SAA page The Faces of AS page
The AS all Sexes Page and the Ankylosing Spondylitis Causes
I also run a closed support group called The Faces of Ankylosing Spondylits
I also run a closed room called Laugh Your AS Off that allows people to laugh and forget their troubles.
I also have two online stores I am working on at this time to be able to raise funds for research.
Today is Feb 3, 2012 we have 213 faces and 81,886 views on our webite. (Editor’s note: And today is February 13th and there are already 90,088 hits!)
My goal is when the day comes to meet my maker I will know in my heart that I did the best I could to my ability to make a difference.
Be sure to follow Cookie’s work (if you don’t already) and “meet” her through the web on her blog, her Twitter or Facebook, and the Faces of AS community.