In the Narrative Matter’s second installment of our Lupus Series, I had the chance to talk with DeVonshae Ali, a woman who has been battling lupus for nearly 20 years. She shared her story with me and gave insight on what she’s had to deal with on her journey with lupus.
DeVonshae is a spokesperson for the Lupus Foundation of America – Heartland Chapter, and she has a form of lupus that affects her entire body.
“25 years ago, I was pregnant and I was having all types of numbness, I went temporarily blind, I was losing hair, I had joint issues, burning, fevers, and fatigue.”
DeVonshae continued to tell me that due to her symptoms and how lupus can sometimes act as other diseases, she was originally misdiagnosed with MS, which is a disease that attacks the central nervous system.
She visited many doctors who weren’t able to determine what was wrong with her. She laughingly recalled, “And of course, everyone said it was all in my head.”
She eventually met with a doctor who took a look at her file and ultimately determined she was indeed misdiagnosed. After running tests and her doctor placing her on Hydroxychloroquine to see how it worked with her body, within two weeks, DeVonshae’s symptoms had significantly decreased.
She laughed, “I felt like a brand new woman.”
DeVonshae and I continued to talk about how lupus wasn’t as well known years ago as it is now. She told me that she knew little about lupus in her younger years, but she definitely remembered that many people were dying from the disease then.
She then recalled the fear she felt years ago that there was a chance she wouldn’t get to see her children grow up. What helped her through this tough time was educating herself more about the autoimmune disease and using all the resources available to her.
“I was given so many resources from the Lupus Foundation and United Way, and there were teleconferences where you could hear from doctors and people who are in the medical field about the new and best practices for lupus.”
DeVonshae continued to say that the Lupus Foundation has helped her in tremendous ways, from finding medical assistance to resources for hair replacement.
“Being connected to an agency that really saw what I was going through and wanted to keep me connected and be a part of support groups really helped me to fight the disease. I’ve been blessed to be one of their featured faces of lupus and to be able to tell my story to the community.”
DeVonshae went on to say that lupus is an unpredictable disease and a person won’t always know when they’ll have a flare-up. Her advice to those battling lupus is to “take time for you and be kind to yourself. Don’t be so hard on yourself if you have to cancel plans and you can’t accomplish everything you set out to do.”
She also added that taking your medications, eating healthy food, relaxing, and limiting stress are also big parts of feeling your best with lupus.
DeVonshae has been through a lot in her lupus journey, but she continues to face each day with tenacity. She said, “I’m alive, and I am thriving very well.”
If you would like to learn more about lupus and the available resources for patients, I recommend visiting the Lupus Foundation of America; and to read DeVonshae’s personal story from The Lupus Foundation, click here.