Ebony McKinley
Clinton, MD Erythematosus
Living with Systemic Lupus for 6 years
Ebony’s story began in 2008, when she experienced what she thought were flu –like symptoms. Feeling very fatigued, and experiencing joint pain, Ebony discounted these symptoms, and thought she was coming down with a very bad cold. As time went on, Ebony’s symptoms began to intensify and included severe joint pain, finger discoloration, and a noticeable rash on her face. A severe case of acid reflux, along with her other symptoms are what caused Ebony to finally see her primary care doctor.
After going through extensive blood tests and scans, and seeing 4 different doctors (which included her primary care physician, hematologist, general surgeon, and Rheumatologist), Ebony was finally diagnosed with Systemic Lupus Erythematosus (SLE) by her Rheumatologist. Ebony describes fatigue as being one of the biggest obstacles when dealing with this disease, which leads her to be in a state of depression at times. Ebony still works her full time job, but must take off at times when she is not feeling well. “I am blessed with understanding supervisors and flexible job” she says.
In addition to taking 14 pills a day, Ebony must take steroids which cause her weight to fluctuate. “There are times where I just sit and cry, my lesions on my face make me feel disfigured and I don’t look like myself”, Ebony describes. “People stare, and wonder what is wrong with my face”. Through all the tough times, Ebony recalls her strong support system as the driving force to helping her get past the difficult days. She describes her mom and boyfriend as being “Very encouraging and supportive, even at my lowest points”. Ebony describes her worst flare that occurred recently in which her entire body felt like it was burning. She had blisters and had to use many medications and gauze to help heal her condition. This severe flare caused her to be out of work for 2 weeks. Ebony attributes having great doctors and her support system are what helped her get through this difficult time in her life.
Ebony wishes to share her story to push others who are struggling, to stay encouraged, and keep fighting. “Even when you are going through a flare, tell yourself that you can get through this”. She hopes to educate others about this disease, especially those who don’t have lupus, so they can understand what patients go through each day. Ebony encourages those who are have been recently diagnosed to make sure to get a good doctor that you can relate to, and trust.
Thank you Ebony for sharing your story!