A S Faces Is Featured In “Spondylitis Plus Winter 2012″
SAA member, Cookie Hopper, is pictured here on the left, after her Remicade infusion.
The woman on the right is Genie Hayward, who has been Cookie’s infusion nurse since her diagnosis in 2002 and is, in Cookie’s words, “my rock and supporter in this long journey”.
“Our goal is to have ONE THOUSAND faces…
There is strength in numbers.” ~Cookie
“My name is Cookie Hopper, and I was diagnosed with Ankylosing Spondylitis in 2002. I started showing symptoms around 1971 or so. I live in Texas with my husband and daughter along with my grandchildren. I spent most of my life feeling alone and very isolated; not having anyone who understood my disease made life very difficult. I found the Spondylitis Association of America in 2009.”
What inspired you to create Faces of AS?
“There was a time that my struggles with Ankylosing Spondylitis and other difficulties had brought me to the brink of despair, and I had made the decision to take my life. My husband’s intervention changed the course my life would take.
A number of years later, I came across someone with AS who was feeling the same way that I had about life; not long after we learned that he had died. I remember how desperate and alone I had felt, and didn’t want anyone to ever feel that way. I wanted to do something to bring people with AS together on a personal and emotional level.
I didn’t start Faces of Ankylosing Spondylitis to raise awareness, or funds; I didn’t start it to become a health activist, or even to find a cure for AS. I started Faces of AS for that desperate frightened person in all of us when we learn we have this disease.
I wasn’t sure how to do this and then one day a gentleman from the UK named Kevin Andrews shared his pictures with me, and I knew what had to be done. We had to show the world the reality we deal with, and be honest about our lives. So I decided to start asking people to share their stories about their lives with AS.
I never wanted anyone to feel that the only hope they had was to take their life. I wanted to show that with support from one another, we can not only survive but thrive in our lives with AS. I wanted to do something that would make my life of pain and
suffering have meaning, I didn’t want it to be for nothing.
How do you feel about the project’s success so far?
“I am blown away by the reception that Faces of AS has received and by the response of the spondylitis community. We are almost at 600 stories at this time, and over a quarter of a million views on the site. It is so amazing and unbelievable to me. Each day, I am grateful that people were willing to come together and bare their souls to make a difference for others. For me personally, the true triumph is when people tell me that they are getting together and meeting each other.
That they know that from this day forward when times are unbearable they only have to reach out to one of the others on this site, and they will have the emotional support that is needed to survive this disease; they know they are not a support group but a family.
Where do you see Faces of AS going?
Any future plans or dreams for the project you’d like to share?
”I am hoping that one day each of the Ankylosing Spondylitis Societies across the world will include a link to the Faces of AS on their site, to make it global and bring us together to work toward finding a cure. I am also hoping that in the future I will be able to set up a fund that will help people with their personal and medical needs. Those are my ultimate goals for Faces.”
~ You can find Faces of AS on SAA’s website at: Spondylitis.org/faces
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown.” ~Cookie
*Cookie Hopper is Face # 62. We chose not to truncate her story to allow for printing here, but rather invite you to visit the website, and read her story in full.