Thirty-One Faces of Hope: Twanda Black
The lupus community includes people living with lupus, friends, family, and supporters across Georgia. For Lupus Awareness Month, we would like to highlight some of our lupus heroes and champions.
Meet Twanda Black
My lupus journey began over 40 years ago when I was in college. During my four years, I was a constant visitor to the infirmary, I’d say 4-5 times per year, each time with flu like symptoms. That’s what they told me I had- the flu! I was on the dance/drill team for four years but it was tough, I often performed in pain. I managed to graduate and happily moved back home because I needed a doctor that could help me find out what was really going on. I visited at least 7 doctors, who told me I had mononucleosis, the flu, pneumonia, a tropical illness just to name a few. I kept looking until I found the wonderful, Dr. John Ross, who was committed to finding out what was going on with me. He sent me to specialists and researched until he discovered that I indeed had lupus. I loved this doctor because, he gave me his personal number to call him anytime I was having severe symptoms or just in a panic. Now during that time they treated me with steroids, I went from a size 3 to an 18- it was crazy! My mother cared for me as best she could, but there was not much for her to do except pray and help me when needed. I had always been an athlete of sorts, dancing, cheerleading, running, exercising, so some of my friends said I was being lazy, that there was nothing wrong with me, to get up, shake it off and get moving. I didn’t look sick! When you’re 22 and can’t get out of bed, it is depressing, but I learned to rest and when my body was speaking, I listened. In retrospect, I most likely had lupus as a teen, I was always extremely tired, but I attributed it to being in too many clubs, activities and in the band year round. I didn’t realize that level of fatigue was not normal. I have lived by the mantra to never judge a book by its cover-there are folks who have visible disabilities and invisible disabilities, and I am one of them!
When I was pregnant with my first child, the doctors suggested I have an abortion because the child could be born with birth defects, so you know I had a serious talk with God about that. I had two live births and two miscarriages and both my young men are great human beings with no birth defects. I was blessed that my symptoms were at their worst when my children were small, so they don’t remember when I couldn’t care for them, pick them up or play with them. I thank God for my husband and support system during that season of my lupus life.
During my career in radio, I was always at outdoors events and it taught me that I had severe photosensitivity. After exposure, I am down for 3-4 days. I only spend a limited amount of time in the sun these days, and being a Florida girl, that hurts! I also have lupus nephritis, which did not get diagnosed until maybe 20 years after my original diagnosis. The flares are very few these days but I am careful to take care of myself. My new mantra is Peace Above All! I don’t create stress for myself nor do I take on other folks’ stress, I rest when needed, stay out of the sun for extended times and I remind myself that there is Hope for us all-So Never Give Up!
Thank You to Our Generous Sponsor
Choosing to prioritize your kidney health might be uncomfortable, but the reality is that up to 30% of people who live with lupus nephritis may experience kidney failure, which can lead to dialysis or even a kidney transplant. Luckily, there are steps you can take now that may help, such as scheduling routine tests and asking your doctor about treatment options. Talk to your doctor to learn more about routine testing and treatment.
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