Many studies have shown that young Black women develop lupus at a much higher rate than any other demographic.
Lupus, an autoimmune disease that occurs when a person’s immune system attacks its own healthy tissues, affects millions of people worldwide, with symptoms ranging from chronic fatigue to joint pain.
In our new Lupus Series, The Narrative Matters will be sharing the stories of women who have either been directly affected by lupus, or those caring for someone with the autoimmune disease.
We hope to inform our audience about lupus and provide them with information regarding symptoms, available support, and everyday living with the disease.
I had the chance to speak with Curtisha Anderson, a woman diagnosed with lupus at the age of 14, and she recounted her journey.
“My initial symptoms were extreme fatigue, high blood pressure, and I retained a lot of fluid. I remember I retained so much fluid I was unable to walk.”
Curtisha’s symptoms didn’t improve over the weeks so her parents took her to the emergency room, where doctors ran many tests. Unable to pinpoint what was wrong with her, the doctors reached out to the Mayo Clinic, who were able to give her diagnosis fairly quickly.
Curtisha went on to tell me that when she was diagnosed, she had end-stage renal failure, which occurs when a person’s kidneys aren’t properly working, in which, according to the Mayo Clinic, “dangerous levels of fluid, electrolytes and wastes can build up in your body.”
Curtisha said, “After I was diagnosed, they told me I was in end-stage renal failure, which was the reason why I had retained so much fluid, so I had to start emergency dialysis.”
Due to the nature of her condition and her dialysis treatments, Curtisha missed a lot of school. To help combat this, she and her mother received special training to be able to do her treatments at home. Her kidney functions ultimately improved and she was able to stop dialysis after three years.
Curtisha then told me that she was off dialysis for 22 years, but during that time, she still experienced flare-ups and a few health issues, but nothing life-threatening. However, after a trip to her doctor, he informed her that she would have to start dialysis again because her kidney health was declining, as it did all those years prior.
Curtisha laughingly recalls, “Of course I cried about it.”
Curtisha, being the proactive person that she is, told her doctor that she would like to get started on the process for getting her dialysis treatments. In order for her to do the treatments at home again, she would need to have a surgery to put a catheter in her stomach.
Her second round of dialysis lasted for a year and a half, and after that time, she received a kidney transplant.
Curtisha has been on her journey with lupus for 30 years now, and she gave me some insight on how a person dealing with it can better navigate this new world.
First, she stressed the importance of having a support system made up of family and friends. She remembers when she was diagnosed as a teenager that her school community would send her work home so she wouldn’t fall behind.
“Of course I was missing out on things because I was missing a lot of school, but they surrounded me with so much love that I never felt alone.”
“Try to find support from other lupus patients. The Lupus Foundation has support groups, and I found that talking to other patients has really helped me.”
Secondly, Curtisha informed me that someone battling lupus will have to make changes to their diet. She spoke of her “no salt, no sodium” diet, which was a challenge, especially during her teen years.
Lastly, Curtisha recommends that people become more informed about this autoimmune disease, because when she was diagnosed, she had no prior knowledge of lupus.
“It’s something that I had to learn about over the years. When I was diagnosed 30 years ago, there was not a whole lot of information out about lupus. I remember going to the library trying to find information, and if I did find an article about lupus anywhere, I held onto it dearly.”
She also stresses the importance of those with lupus to take an active role in their health. She says it’s imperative that a person knows what medications they’re taking, what their lab results mean, etc.
Through the years, Curtisha has been involved with the Lupus Foundation and she does advocacy work in hopes of helping people become more aware of lupus and how it can affect Black women. Curtisha is a light in this world, and she will continue shining it on others.