A Journey from Patient to Awareness Trailblazer

A Journey from Patient to Awareness Trailblazer

Effie Koliopoulos is a rheumatoid arthritis warrior. As a teenager, like many of us, she thought arthritis was not a condition that she needed to worry about at her age. Through subtle messages in advertisements or television programs, arthritis was always portrayed as a condition of the elderly. Despite being aware of her father’s autoimmune condition of psoriasis, neither her, her parents or her doctors made a link to her own health issues. At the time, the different ways autoimmune conditions show up in different people was a huge hurdle to overcome before getting to a diagnosis. Effie acknowledges that awareness has advanced since she was diagnosed in 2005 and knows there is still a great deal of work to be done to ensure more a rapid diagnosis and treatment of arthritis and other autoimmune conditions.

We asked Effie what she would like doctors to be aware of when working with patients. Her response was simple yet deeply impactful – that doctors needed to be aware that patients are human, more than their condition, they still have goals and dreams despite their condition or disability. By the time patients reach a physician who diagnoses them, they have already been through a gauntlet of pain, emotions and medical misdiagnoses.

“Showing compassion and empathy, rather than a cold demeanor as a doctor is a must. Being positive and saying, ‘I will help you get better and back on your feet,’ rather than ‘You have a long road ahead of you’, are two very different approaches. One lifts you up and empowers you, and the other makes you even more scared, isolated and alone than you were before you even walked into that office.”

Her own experiences made her realize that a great deal of pain and frustration in her journey could have been avoided if there was greater awareness. She made it her mission to create a campaign and spread a critical message – that others in similar circumstances are not in alone. “I wanted others to know that they are being seen, heard and validated. That there is hope even if you are being dismissed left and right. That healing can happen, and you can find the root causes, even if people say achieving remission is rare and a cure is near impossible.”

At heart, Effie has always been a trailblazer and philanthropist and that led her to her current role as an extremely active campaigner for people with arthritis. Central to her actions is the belief that “the more awareness, the better the chance of improved resources, support and treatments becoming available. The best people to learn from are those actually living with the condition. They can tell you what’s working, what is not, and aid in giving feedback to improve their lives. It is really a team effort, and this is the basis of awareness- to bring people in to learn and help us by getting involved.”

Effie believes that there are key issues that should be addressed during Arthritis Awareness Month. She wishes that healthcare providers, drivers of regulations and other stakeholders were aware that there is more to these conditions than the physical symptoms. She believes that mental health of patients with chronic conditions deserves more attention. When a patient’s body is physically not as strong, their mental strength and capabilities require just as much attention as their physical symptoms and can have just as great an impact on a patient’s quality of life.  “Knowing when to seek out help and why, is pivotal to a patient’s success in coping and acceptance.”

She also believes that changes need to occur so that financial support for these patients is more easily accessible. Much still needs to be done to make healthcare more affordable given the serious nature and impact of arthritis.

To learn more about Effie and what she does as an RA activist visit her website https://risingabovera.com/ or her you tube channel https://bit.ly/3e0WnHt. You will find a wealth of information and support and may be inspired to become an activist yourself.

To share your own arthritis journey and become an inspiration to others, submit your story at https://arthritisjourneys.com.

Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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