Providing Answers, Support and Hope in Georgia
Thirty-One Faces of Hope: Shea Evans
The lupus community includes people living with lupus, friends, family and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Shea Evans
Some of you may know me, some of you may not. My name is Shea Evans. I am an almost 29-year-old who recently celebrated my 9-year anniversary with my buddy, lupus. Oh, and 9 years with plaquenil too - couldn’t forget about that given all the recent press!
I was diagnosed with lupus, rheumatoid arthritis, and dermatomyositis in 2011, when I was 19 years old and an Indiana University student. Since then, there really hasn't been a dull moment. From a septic knee caused by being immunocompromised to a total hip replacement due to avascular necrosis from prednisone to a sudden appendix burst to random tooth roots dying.
A complete dependence on legally prescribed (read: pushed) opiate pain pills just after my initial diagnosis led me down a dark road. I was lucky enough to claw my way out of that dependency thanks to medical cannabis legal in the state of Illinois (where I reside) - without which I would probably be dead. 2016 brought me a curveball - a new diagnosis of fibromyalgia... 2017 brought me my first year not spent in the hospital. 2018 I was diagnosed with POTS and spent 18 months passing out randomly without warning.
2019 was a different beast for a myriad of reasons, but it was my hardest yet. Towards the end of the year, I finally had an MRI on my elbow that stubbornly had been refusing to straighten for almost a year and found my disease was as active as ever. 2020 started with a bang as I switched from Imuran (a drug I was comfortable and happy with for 9 years) to methotrexate, an intimidating drug which proved to be difficult to adapt to but ultimately I finally feel like I am living again. As you can imagine, the medical challenges keep changing and evolving, however, one thing that remains constant is the need for more resources and advocacy in the realm of this disease.
Currently, the treatment options for lupus are few. Most options come with absurdly distressing, irreversible, sometimes deadly side effects. Some of the ones I've dealt with personally include: hair loss, truncal obesity, moon face, buffalo hump (SERIOUSLY, who names these?) insomnia, weight gain, weight loss, hot flashes, skin rashes/irritation, kidney malfunction leading to elevated numbers, the list could go on. With these treatments and side effects, come more medications to counteract, and so on.
The need for research into Lupus and suitable treatment options is massive. A few years ago, the first drug in 50 years was approved by the FDA to treat lupus. The caveat? It is only effective in a small percentage of patients. This is not enough. The amazing stem cell trials in effect currently? Wonderful!!! But they are still not enough. Eligibility issues and lack of access to healthcare or insurance place roadblocks that many with this disease are unable to navigate. I plead for more to be done.
I am proud of my scars and my body... It amazes me every day, but I know it can turn on me at any moment. If you are able to donate, please know your funds are helping patients directly through education, awareness, and research.
For those that carry a lupus diagnosis with them every day - I urge you to explore your options and never stop advocating for yourself. Never stop fighting for your health. You are the only one that knows your body - and that constant fight allows room for hope to stay with us. Thank you to my incredible support system, family, and team of doctors that pick me up and carry me when I'm too tired to continue on alone. Your support, patience, love, and understanding are impossible to put into words.
My dad, Steve Evans, has been raising funds for the Lupus Foundation of America since my diagnosis. Dad - I can't believe you've done all of this, for those just like me with lupus, selflessly since 2011. You give me hope every day!
-Shea Evans