Some of you may know me, some of you may not. My name is Shea Evans. I just celebrated my 8 year anniversary with my buddy, Lupus.
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. 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- without which I would probably be dead. 2016 brought me a curveball- a new diagnosis of Fibromyalgia and PTSD... and 2017 brought me my first year in which I was not hospitalized! 2018 involved a POTS diagnosis and a broken arm, and who knows what this year will bring.As you can tell, the medical challenges keep changing and evolving, however, one thing that remains constant is the need for more resources and advocacy.
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 personaly include: hair loss, trunkal 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. I am proud of my scars and my body... It amazes me every day, but I know that it could turn on me at any moment. If you will be in Chicago on June 9th 2019, I would love for you to come join my walk team. In addition, I have pledged to raise funds and awareness against Lupus so that one day we may see a cure for this debillitating illness. If you are able to donate, please know your funds are helping patients directly through education, awareness and research.