What is lupus like for those living with the disease? (2024)

NORFOLK, Va. — You’ve likely heard of lupus, but do you know what it is? It is an autoimmune disorder that’s difficult to describe, diagnose and treat.

Lupus is one of those diseases you can’t often see. Most people with it look perfectly fine, but their body is in daily turmoil. With May being Lupus Awareness Month, Jen Lewis thought it would be a good time to talk about it.

She went to see Dr. Michael Cannon, a Rheumatologist in Virginia Beach.

“Lupus is a disease where the immune system is recognizing itself and it shouldn’t be, and it continues without an off switch and winds up doing damage to organs over time," he explained.

Our immune system is supposed to fight infections. For people who have lupus, it attacks healthy tissue instead.

“Some people even call it 'the great imitator' because it can affect so many different body parts and it looks like many other different diseases," Dr. Cannon continued.

Diagnosis can be tough because of similar symptoms as other autoimmune diseases, like Crohn’s which targets the intestines, or multiple sclerosis which attacks the brain.

“Sometimes fatigue, joint pain, those symptoms come and go, which sometimes lead to delays in diagnosis," he told Jen. "It can be skin rash, can be losing hair, it can be joint swelling, joint stiffness, headaches, chest pain, again, symptoms that are seen in many other diseases.”

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Lupus is a rare disease impacting 1,000 to 2,000 people. Women are most at risk.

Turns out, nine out of 10 patients are women, and one of those women is Katisha Vertrees of Norfolk. She was only 19 when she was diagnosed. Lupus snuck up on her when she least expected it.

“I was just getting tired," Katisha shared. "I was getting swollen ankles, things you kind of put off until it just hits you one day and you’re super tired and you just can’t get out of bed.”

Upon learning she had lupus, Katisha simultaneously found out her kidneys were failing. Lupus had already taken its toll and now she is waiting for a kidney donor and must have daily dialysis to live.

When the day finally comes and Katisha has a new kidney, lupus should no longer be an issue for her.

“All of the medication that you take for kidney transplantation is the same medication you take for lupus, and it should put lupus into remission," Katisha said.

Unfortunately, what Katisha is going through is not uncommon for lupus patients.

“About 50% of our patients will get organ damage from lupus, kidneys being one of the top ones," according to Dr. Cannon. "Two out of five of our patients that have Lupus will show kidney involvement.”

To complicate this disorder further, there are four different kinds of lupus. The most common is called systemic lupus, or SLE, which can cause inflammation to organs or organ systems acutely or chronically.

Katisha has SLE and so does Chastity Corbett, the Founder and CEO of the Social Butterflies Foundation, a local lupus support organization.

“My lupus affects my blood, my brain, my joints, my skin and sometimes the muscles,” Chastity explained to Jen.

Chastity knows firsthand what it’s like to live with lupus and she saw a need for support and resources here in Hampton Roads.

Lupus can cause debilitating pain and fatigue for some people. According to the Lupus Foundation, 89% of people with lupus say they can no longer work full-time due to complications.

“People need help getting their prescriptions, people need help just paying their doctor co-pays when they go to the doctors or if they get stuck in an emergency room,” said Chastity. "We do lots of emergency room visits. They need to pay their utilities, their rent,” said Chastity.

Emergency financial assistance is just one of the ways the Social Butterflies Foundation helps those battling lupus. Support group meetings are held monthly. If the disease robs a person of their hair, a wig outreach program is available. So is a care outreach program that works to ensure survivors know that have a group in their corner.

“They know they are not alone," Chastity shared. "One of my mantras is, butterflies don’t fly alone. So, you never see a butterfly out there by itself.”

Butterflies have long been associated with lupus because of the butterfly-shaped rash that can appear on the face of patients. Not everyone sees that rash, however. Symptoms can be much more vague.

If lupus is something you’re concerned about, Dr. Cannon recommends a visit to your primary care physician or an urgent care. There is a specific blood test that checks for autoimmune disorders.

A good resource for additional information is the Lupus Foundation of America. Locally, so is the Social Butterflies Foundation.

The organization’s annual fundraiser, the 2024 Butterfly Walk for Lupus and Fibro, is Saturday, Aug. 3 from 1 p.m. to 4 p.m. at the Boo Williams Sportsplex in Hampton. To register, click here.

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