Costa Nelams

Meet Costa Nelams from Detroit, MI. Costa has been diagnosed with lupus erythematosus since 2011.

Costa’s Story:

I was diagnosed in 2011 by my primary care doctor Susan Harold. My previous doctor didn't know what was wrong with me. I went to visit him after feeling extremely weak, nauseous, experiencing weight loss and shortness of breath. Lab work was done and he told me to return back to work. The next day, I went back to work. I felt worse, called a cab and went back to his office. I heard him and the nurse say that my hemoglobin was at 5. At that time, I still didn't know what that meant. He told me to go to the emergency room for a blood transfusion. He never came. After several blood transfusions, lots of lab work, tests, exams, upper GI, lower GI, colonoscopy and a biopsy was done. The doctor told me that I was still losing blood. She was going to find out. She told me that she was going to test for lupus because she believed that I had Lupus. That was it! She confirmed that I had Lupus. She immediately started me on Rituxan.

My symptoms were weight loss, fatigue, hair loss, unexpected pain, bad pain, light headed, very sensitive to sunlight, the list goes on. Some of the challenges that I had to face were not easy. I could no longer work full time. I couldn't lift anything over 5 pounds. Not being able to socialize with others as much as I did before. Walking long distance was not an option anymore. I can only walk short distance with rest breaks. Due to shortness of breath, I had to limit my activities, chores and traveling had to change as well. The biggest challenge was going from full time to part time to two days a week and every other weekend due to constant lupus flares and being in and out the hospital. I had a lot of restrictions. So my job decided to let me go. It's 2023, I am still alive. I use a walker 90 percent of the time and oxygen as needed. I am still taking my meds. I have to adjust my lifestyle. I will not give up. Praying for a cure.

What's one piece of advice you would give to someone who is newly diagnosed?: Ask lots of questions.

What is one misconception you wish you could change about lupus?: All lupus patients are not drug addicts. Our pain is legitimate.

What brings you joy?: Word searches, making gift baskets and giving back to the community that I live in. And helping other warriors.

I am glad that we have lupus groups in Michigan because living with lupus is an ongoing battle. We can talk, share our stories with others and attend lupus events.