Ten RA Advocates You Should Followby Cathy Kramer Patient Advocate
With every voice that is shared in the rheumatoid arthritis (RA) community, the closer we get to representing all our thoughts, feelings, pain, and needs. Together, we are creating a safe space to learn and advocate for ourselves and others. HealthCentral would like to thank each one of you who has shared your experiences with RA. You are appreciated.
Choosing the ten advocates to follow
The 10 advocates here were selected because of their time spent in the community, dedication to RA advocacy, and ability to go one step further in meeting the unique needs of the community. These advocates looked beyond the diagnosis of RA to all the other areas of our lives that are affected by this disease and found a way to support those needs.
Rick Phillips: RADiabetes
Living with both type 1 diabetes and RA is no easy feat. Rick shares his journey with both through his blog, RADiabetes. In addition, he is active on social media and is a regular participant in advocacy projects and Twitter chats. He is also the creator of RABlog Week, now in its third year. During this week, blog or no blog, all in the community are invited to come together and share their experiences and thoughts on a variety of RA-related topics.
Molly Schreiber: And Then You’re at Jax
Molly advocates for both RA and Type 1 Diabetes. She is also active in community-advocacy events and on social media, where she has shared her day by day struggles and triumphs with knee surgery—photos and all!
Two big recent efforts were #Save32MIL, a non-partisan Twitter campaign for sharing why healthcare is important. Molly also teamed up with other health conditions to create a Facebook page that provides supplies to those with chronic illness during Hurricanes Harvey and Irma.
Kirsten Schultz: Not Standing Still’s Disease
Kirsten advocates for a variety of issues related to chronic illness through her blog, social media, and health sites. She is often a participant and/or guest speaker at health engagements. In addition, her training as a sex educator allows her to address the sexual issues related to chronic illness. Kirsten created and runs Chronic Sex, a website and podcast that offer resources and coaching. She also hosts weekly Twitter chats.
Lene Andersen: The Seated View
Lene is no stranger to living with chronic illness, as she developed juvenile arthritis at age four. She has been an integral part of the RA community for years, sharing her story and valuable information about RA on her blog and social media, and as community leader on HealthCentral. She is also an author of books on living with RA. As a photographer, Lene advocates for disability awareness while sharing the beauty of everyday.
Britt Johnson and her mother, Jody: The Hurt Blogger and Rheumer Has It
Living most of her life with autoimmune arthritis, Britt has learned to stand up for herself and others at advocacy events and on Twitter. She’s not afraid of controversy when it brings awareness to chronic illness; for instance, to show the reality of life with chronic illness she once live-tweeted for 48 hours. Equally worth checking out is Britt’s mom, Jody, who has the unique perspective of dealing with two chronically ill children while also discovering her own autoimmune disease.
Life According to Kenz
Kenzie takes us along on her RA journey, blogging about hospital visits and numerous diagnoses as she continues working towards finishing college and dating. As she goes through life she always takes with her a positive attitude. Even on her worst days, Kenzie doesn’t hesitate to leave a kind word for others. Most often you can find her on Instagram, where she shares photos of her service dog, Ophie, and her fun adventures.
Mariah Leach: From This Point. Forward.
Besides being a mom to two young boys and one on the way, Mariah writes for several different websites about everything RA, including intimacy, parenting, and legal issues. She also spotlights community members on her blog. Her main passion is helping moms or soon-to-be moms with chronic illnesses. Mamas Facing Forward is her Facebook group encouraging and supporting mothers at all stages.
Matt Iseman: Celebrity Advocate
Matt Iseman is a comedian, actor, and host of American Ninja Warriors, as well as a doctor. Plus, he lives with RA and spends time advocating for the disease. Matt recently competed on and won The New Celebrity Apprentice, donating the proceeds to the Arthritis Foundation. Matt is also a spokesman for Joint Decisions, an educational initiative from Janssen Biotech to support and empower people living with RA; he participates with fellow advocates and hosts educational videos.
Dr. Laurie: Psychologist
When originally diagnosed with RA, a person’s initial concern is not about mental health. However, time has a way of helping us understand that RA is about more than just our joints. Dr. Laurie, a health psychologist and vice president of education for CreakyJoints, is a powerful advocate for RA. She has written numerous articles providing tips on managing depression and negative thoughts, looking to the future, and much more.
Arthritis National Research Foundation
The Arthritis National Research Foundation has set out to #CureArthritis. To make this a reality, they provide grants to scientists who get the initial research started. Funding for this charity is accomplished by fun campaigns that bring awareness to arthritis through races, bracelets, T-shirts, patient stories, and an upbeat and energized team of advocates.
We are all in this together
It is an exciting time to be in the RA community. Together we are growing and helping each other to meet the needs that come with living with RA. Thank you to the 10 advocates profiled here. Your work is so valuable.