Do You Want To Be APart Of Something Big
I have wanted to find a way to help the Spondylitis community since I received my diagnosis of Ankylosing Spondylitis. How I can do that has changed over the course of the past two years. In the beginning, I thought if I can record my success and share it with the work, it will give others hope. I began hiking, because I knew staying active was a big way to help slow progression of this disease. My videos can be found under my name Summer Canady or Kick Some AS on YouTube. This is an insight to how my life has changed.
I can no longer hike. So last year I started blogging about AS. It was a very positive experience for me. One that grew much deeper than I ever expected it too. I love blogging as a way to be an advocate and raise awareness. This year I started a support group in my local community. This group is growing to be a great success and I’m excited to continue this journey. I have also started several projects. I’m working on 2 fundraising events, and 2 awareness projects. These things will be announced and discussed more in depth at a later date. Then there is Giving Spoons, I just got this project started. It’s an awareness and advocacy project, but mostly it is a funding and emotional support project. Giving Spoons will write letters and send cards during those times one needs the extra love. Many people are struggling to cover the financial burden this disease brings on, Giving Spoons is here to help with that, and to provide little things to improve the life of others with AS.
Taking Social Media By Storm
I am working to take Social Media by storm. I wish to have all participants follow all accounts, to stay up on education, awareness and other information about living with Ankylosing Spondylitis. All my accounts can be found under my name Summer Canady and Kick Some AS. I am on Facebook, Instagram, Twitter, Snapchat, and YouTube. I will be creating an Etsy and Pintrist account for Kick Some AS as well. Get used to seeing the phrases Giving Spoons and Kick Some AS. Using the motto that Together We Can Kick Some AS and Giving Spoons To Kick Some AS, will lead us to a better for future generations. Just by following these accounts and sharing post, you help make that happen.
Let’s talk numbers, currently more people have AS then ALS, MS and RA. Yet even at that, nobody knows what AS is. It’s an unspoken disease and many Doctors don’t understand stand it. I have 277 friends on Facebook. 61 on Instagram and 24 on Twitter. If each person shared my post about AS, and asked just 5 others to share, and so on so on. We would reach millions before we know it. If each person that shared, got every friend on the Facebook to share and so on, just think of how fast our disease is going to become a known and regularly supported disease. I see hundreds of post a month about share for Cancer, share for Autism, Diabeties Awareness, and a few others. There has been the ALS ice bucket challenge, and many other things like it. Where is the global awareness for AS? It’s not there, but we can change that. Just by sharing something and expressing the importance of sharing it to others.
Blue Is Our Color
I am going to challenge each person that reads this. To change their cover photo to a blue background with either, #Kick Some AS or Together We Can Kick Some AS or Giving Spoons to Kick Some AS. If we all join together in this, we can make a difference. Do you know what making a difference means for people like me? It means not having to be told we are crazy for years. Not having to wait 10 years + for a diagnosis. Not getting confused looks when we say the name Ankylosing Spondylitis. Knowing people can spell it and pronounce it, rather then say “ ankysaurus spindle what? Is that some dinosaur thing?” It means better research because people support the cause just as if it was cancer. Better medication treatment plans. More knowledgeable Medical teams. Being given a team from the point of diagnosis, to monitor heart, lungs, and other potential issues that can occur with this disease. It means insurance approval for more treatments. It means understanding, and acknowledgment. It means it means better chances with disability cases. That’s a lot of ways to make a difference in someone’s life, and all just by sharing information about AS specifically.
We can’t group AS in with other diseases, because though it can mimic autoimmune and arthritic disease, it’s still different. While being grouped, people don’t look into the weird thing in a group of many we’ll know Diseases, they just don’t even bother, that teaches people nothing. So it needs to stand out on its own. Be talked about on it’s own. Learn to spell it, and pronounce it, so you can talk about it. If you know me personally, you should want to be a part of this fight. Simply because it’s robbing me of my life. It’s taking away everything I love. You would want to support my cause, because that is what friends and loved ones do. You would see that I am trying to make something big, a global impact for the AS community. You would want to see that successful and to do so all you have to do is read, and hit share. Simple, so why not do it? If you don’t know me, that means you have AS or have a loved one with it, and you should feel all the ways I just stated for them or yourself. A global impact is not made by one person, it’s made by millions of people believing in a cause. If you are any of the people mentioned, you should believe in this cause.
Resources Are Out There
You can find some great information out there. I share a lot of it. I talk about it in my blogs. You can also find inaccurate information. Not everyone that has this diagnosis knows the difference between good and bad information. They will share something that is completely inaccurate, offer poor advise and swear they know best. Not always true. I am going to add some resources that I know to be good. Great places to find things if you just want to learn and help others.
The Spondylitis Association of America
The National College of Rheumatology
The Mayo Clinic
The Spine Institute
This AS Life
Kick Some AS
Bristol Spondylitis Support Group Kick Some AS
Charis Hill Being Charis