I quickly learned on my journey how many people are struggling due to long periods of not being diagnosed. I have worked in healthcare all my life, from emergency medicine to the hospital. I even provided end of life care for my children's father during 2016. It didn't take long before my symptoms got worse and I truly understood the need for Advocating and awareness for AS. I meet so many people dealing with similar issues and there is so little help. Being involved is the only way to change that. I am a board member for Walk AS One, a support group leader for Spondylitis Association of America, As well as being part of a focus group for social media interactions and awareness and patient advisory panels. I lead two social media support groups as well as my local support group, I blog, and use all forms of social media for Advocating and awareness. I participate in meetings, and seminars and any opportunities that arise. I am a team Leader for team Kick Some AS for the Walk Your AS Off event, have worked with Eli Lilly and Company, assisted in a local Fire and Rescue organization to host a fundraiser for Ankylosing Spondylitis and have lead an AS awareness hike were I provided everyone with information and rescources about AS. I'm most active in my support groups online and in another group that is lead by another SAA leader called Living with Ankylosing Spondylitis. I hope to be a constant source of support and knowledge for those in the community. I created a project I call Giving Spoons in hopes of providing emotional, physical and sometimes financial support. The project is self funded and one of my biggest dreams would be to eventually send out care packages to people in need, and develop a network of Support members willing to assist with transportation, or just be a friend that sits at an appointment or for a surgery and help with financial assistance. I also create items to spread awareness, jewelry, stickers, charms, decals, shirts and shoes.
Shawna has been my best friend and Support for over 20 years. Not only does she drop everything to drive hundreds of miles just to be at appointments with me, but she has also taken on the responsibility of being my healthcare Advocate. She is always there for me and my kids. Hosting online fundraisers and being a support member to others. — Summer
I’m a Patient Leader