“Lupus is what I have, not who I am”

The first glimmer of morning light filters through your bedroom window and kisses your cheek.

You reach to stretch but find you can’t. Your body is tense, stiff as a board. Terror sets in. There’s a fire-like pain in your joints, coursing up and down your sweating frame. You’re burning with fever but your hands are ghostly white, swollen and frigid. Your head thumps with every beat your heart makes. There’s a pressure deep in your chest as you gasp for breath. You don’t know what’s happening. The pain is unbearable. With tears in your eyes, you coax your body to rise but fall back against your pillow. Your energy has vanished. All you can do is call for help and hope someone answers.

Thirteen years ago, this is how DeVonshae awoke.

An estimated 1.5 million Americans have lupus – one of the world’s most mysterious and devastating diseases. Lupus is a chronic, autoimmune disease that ravages various parts of the body and affects everyone differently.

Since lupus mimics so many other diseases, DeVonshae spent eight years bouncing from doctor to doctor with symptoms of swelling, fever, pain and fatigue with no clear answer. “Maybe it’s Multiple Sclerosis. Maybe it’s Hodgkin’s disease. Maybe you’re just stressed…” DeVonshae heard them all.

Her body was weak, she lost over 20 pounds and burning sensations moved through her insides. It felt like someone had set her organs on fire. She had lost hope and, at the time, wished she would die.

Finally, DeVonshae received the diagnosis. She was placed on medication and after a week began to feel like herself. Her fever went down and stayed down. Her body didn’t ache as badly, and she had found a renewed sense of empowerment to live her life better than before the diagnosis.

She was introduced to United Way funded Lupus Foundation of America, Heartland Chapter, her “family of support.” Somewhere in between begging to die and finding help, something amazing happened in DeVonshae’s life. She started living. Things she had never done, places she had never gone and goals she had not yet checked off her list began to give DeVonshae enough willpower to continue fighting.

From the beginning, the Lupus Foundation has provided the support she’s needed, whenever she’s needed it. They’ve given her the hope to cope and the optimism to continue living. While some individuals in DeVonshae’s life have disappeared over the years having not understood the disease, the Lupus Foundation has stood by her side at all times. They’ve been there on her good days and bad.

“They wrap their arms around you holistically, not just medically but financially and emotionally as well,” DeVonshae said. “If it hadn’t been for the Lupus Foundation, I would’ve quit fighting.”

Over the 10 years DeVonshae’s been connected to the Lupus Foundation, they’ve provided her with the support, services and hope she’s needed through research, education and advocacy. They’ve instilled in her the importance of leading a healthy lifestyle. They’ve helped in her struggle with depression in offering seminars and classes, providing her the opportunity to meet others living with lupus. When she needed referrals to doctors and community resources, they connected her to people who could help. When she was interested in switching medications, the Lupus Foundation provided her with the information necessary to make a well-informed, conscious decision that fit her needs.

Although lupus carries symptoms that can unexpectedly hit at any time, including fever, fatigue, nausea and severe joint pain, this 44-year-old Florissant mom is forced to live her life day by day but doesn’t allow her diagnosis to define her.

“Lupus is what I have, not who I am,” DeVonshae said. “To be a divorced mom of four with medical debt, with a sickness that has no cure, and trying to work and go to school, I consider myself a success.”

Between attending Fontbonne University for teaching and working fulltime in the St. Louis public school district, DeVonshae doesn’t have much down time, yet she’s managed to find enough to publish four books, host a local radio show and blog about her life with lupus. But, more than anything, she considers being an official spokesperson for the Lupus Foundation to be one of her favorite uses of time.

After learning DeVonshae’s story and seeing her strong desire to advocate and help others, the Lupus Foundation gave her a public voice, placing a face on the debilitating disease. In her time with the Lupus Foundation, she has shared her journey with thousands – those with and without the disease – at agency-led fairs, seminars, races and other events. Educating, encouraging and empowering those fighting the same fight, DeVonshae says is incredible.

“They see me fighting, staying positive and doing everything I can to live to the best quality of life I can, and it encourages them,” DeVonshae said. “I have lupus, but I’m about to get my master’s degree. I have lupus, but I’m an author. I have lupus, but I’m on the radio, encouraging others on the same journey. I’m a real person. I’m human first.”

About The Lupus Foundation of America, Heartland Chapter

The Lupus Foundation of American, Heartland Chapter is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus and providing support, services, and hope to all people affected by lupus. Their mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy. The Lupus Foundation of America, Heartland Chapter has been a United Way funded agency since 1999.