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My Lupus Story (posted May 29, 2018)

Written by: Iya Bekondo, AAKP Ambassador

It was the year 2000, and I had just relocated to the United States. Word that both of my kidneys had failed was no longer news to me and my family; having suffered from Nephrotic Syndrome since age 7. I had gradually, within a period of 10 years, lost function in my kidneys and at that point was very symptomatic of kidney failure. However, there was talk about testing me for Lupus, an illness which at that time neither I nor my family knew anything about. Although I wasn’t diagnosed with Lupus, it wasn’t far-fetched that the health care team taking care of me decided to check me for it. This was an effort to determine the possible cause of my Chronic Kidney Disease and eventual kidney failure. According to a study by the National Institute of Health, incidents of Lupus are more prevalent in black women of child bearing age, with increased proportions of renal disease progressing to End Stage Renal Disease (ESRD) than compared to white women.

Not only is Lupus more common in black women, it is widespread in women in general. Hence, being female, black, and with kidney failure, it was only sensible that Lupus was on the short list of possible causes of my ESRD. In my case however, Focal Segmental Glomerulosclerosis (FSGS), and not Lupus was the cause of my kidney failure. With May being Lupus awareness month, I want to share some things I have learned about Lupus and how it relates to your kidneys to help increase awareness.

What is Lupus? Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks its own tissues and organs such as joints, skin, kidney, blood cells, brain, heart and lungs. While the specific cause of Lupus is unknown, potential triggers include sunlight, infections, and certain medications. With an approximate 16,000 new cases of Lupus each year, according to the Center for Disease Control, medical diagnosis of Lupus requires lab testing or imagining.


How does Lupus affect your Kidney? When Lupus affects your kidneys, it is called Lupus Nephritis. Nephritis occurs as a result of inflammation of the nephrons – a structure in the kidneys that helps to filter blood. Lupus Nephritis (LN) is therefore the term used when Lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body. LN often develops within the first five years after the initial symptoms of Lupus. Common symptoms are blood in the urine, elevated blood pressure, foamy appearance in urine, increased urination, especially at night, and sudden and unexplained swelling in extremities. To determine the functioning of your kidneys, certain laboratory testing like urinalysis and blood tests will be done, as well as a kidney biopsy to determine the presence of inflammation or scarring in the kidneys.

What are the Risk Factors for Lupus? Your race, age, and sex are the key risk factors for Lupus. Women are more likely to get Lupus than men, and it’s often diagnosed in people between ages 15 and 45. Also, African Americans, Hispanics, and Asian Americans are more likely to be diagnosed with Lupus than Whites.

What are the Symptoms of Lupus? Symptoms of Lupus vary, and onset may be sudden or gradual from mild to severe, and may be temporary or permanent. Episodes of a Lupus crisis commonly referred to as flares occur when signs and symptoms get worse for a while then improve or even disappear completely for a period of time. Common symptoms of Lupus include fatigue, fever, joint pain, stiffness and swelling, Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body, skin lesions that appear or worsen with sun exposure (photosensitivity), fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon), shortness of breath, chest pain, dry eyes, and headaches, confusion and memory loss.

How can Lupus be treated? There’s no cure for Lupus. It is a chronic condition that cannot be cured, and can last for years or a lifetime. However, there’s available treatment that can help relieve symptoms and improve quality of life of patients.

Call to Action: Consult with your physician or healthcare team if you or someone close to you exhibits any signs and symptoms of Lupus, or Lupus Nephritis.

For more information on how Lupus could affect your kidneys, click on the following links: