Effie Koliopoulos

Patient Leader

Effie is a writer, blogger, creative and patient advocate and activist for those living with rheumatoid arthritis, juvenile arthritis, chronic illness, invisible illness and disability. She was the 2018 WEGO Health Rookie of the Year winner and now serves on the WEGO Health Patient Leader Advisory Board for 2019. She started getting involved in advocacy a decade ago when she interned and later worked for the Arthritis Foundation in Chicago, for the public relations department. It wouldn’t be until 2016 and years of experience dealing with chronic illness and disability, that she would be inspired to share her story more publicly. This eventually led to the creation of her blog, Rising Above rheumatoid arthritis in order to help others, build connection among the community and more. For Arthritis Awareness Month, she decided to launch an awareness challenge last May called, 'I Am Keeping It Real With Arthritis' and continued that into this year. The challenge occurred on Twitter and Instagram the first year, and turned into only being for Instagram. To view all the participants Effie invites you to visit her on Instagram and Rising Above ra. . She is hoping that each year will involve to a different theme. Her current advocacy projects include a video film project for those living with invisible illness and invisible disabilities, who use disabled parking placards. This project was inspired by a real-life experience Effie experienced a decade ago in relation to this topic. After hearing and talking to others in the community who are still experiencing similar situations till this day, she felt there was more work to be done in this area. To raise awareness, she is planning a captivating visual storytelling video that she hopes will be eye-opening for society. In order to help fund the project she was able to successfully raise money on Kickstarter this March. In addition to this, she is writing a children’s book for kids living with chronic illness and disability. Her main character is living with juvenile arthritis, a form of arthritis Effie was diagnosed with in her teens. Much of Effie’s experiences were taken into consideration when writing the story. She loves the way children’s literature can capture the hearts of children but adults alike. There is a need for diverse representation in Kidlit and as part of her advocacy she wants to bring forth a story to make a difference in the world. She is curently working to expand her Youtube Channel, RA & Myself. Her work has been featured in The Mighty, Yahoo Lifestyle, Health Central, Everyday Health, theRAconnection, NewLifeOutlook, RA Health Monitor to name a few. She is an ambassador for InvisiYouth, Suffering the Silence, MightyWell and recently joined the educational initiative, Joint Decisions along with a team of advocates living with various forms of arthritis. Follow along at www.risingabovera.com and join the mailing list for her debut children’s book at, www.iameffiek.com

Location

Chicago, IL

I was diagnosed with rheumatoid arthritis at 18 years old. My first experience with advocacy and nonprofit was when I interned at the Arthritis Foundation in Chicago ten years ago. I've shared written and verbal stories for, TheMighty.com, STS.org and soon, Curearthritis.org. I'm now creating an arthritis related initiative, website and YouTube.

Effie creates engaging, informative, and inspiring posts and stories to share what it's truly like to live with RA.  — Justin

Effie’s charisma, compassion and informative YouTube channel gives hope to so many battling RA. She is a Beacon Of Light to all!  — Kristal

I had the honor to meet Effie at this years HealtheVoices and connect with her. She's a passionate, smart and beautiful soul. She does so much for the RA community and I can always find great advice through her blog and social media channels. She is also incredibly supportive of other advocates.  — Eileen

Effie Koliopoulos

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