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'So hard to diagnose': Texas woman with Lupus shares her story, signs to look out for

May marks Lupus Awareness Month. A Texas woman shares her story of how she lost her sister to the disease.

BRYAN, Texas — Imagine yourself waking up with twists and turns in your stomach and not knowing why. You find yourself going to the doctor but not really getting clear answers on what's wrong.

May marks Lupus Awareness month. Lupus can be most common in women, but men can also have lupus.

The Lupus Foundation of America reported that an estimate of 1.5 million Americans and 5 million people worldwide have a form of Lupus.

For Marci Payne, the director of the Lupus Foundation of America, this battle has become personal. She has Lupus and so does her daughter. Her sister also had it, but lost the battle with it at 34 years old.

"So with my sister, it got into her lungs at the end and unfortunately a month before her 35th birthday we lost her," Payne said.

A year later, Payne was diagnosed with Lupus too. 

“It’s kind of like if you have the flu on steroids," she said. "Everyone lives with something, we just happen to live with lupus."

She became motivated to share her story and became an advocate for the millions of people around the world who suffer from the disease. She feared that her granddaughter might get it too.

 "It's not always the kidneys, it could be other areas of your body that it attacks," she said. It can be your muscles, it can be your skin and that I think is what makes this disease so unique and so hard to diagnose is because it can present itself in many different ways."

Chief Medical Officer Dr. Lon Young for Caprock Health Systems shared how tricky diagnosing Lupus can be.

“Lupus is a challenging diagnosis because it can have almost any symptom, there’s such a wide variety of symptoms that come with Lupus,” Young said.

Young said people need to be advocates for themselves and be honest with their doctors about the severity of their symptoms. People suffering from this condition can experience extreme fatigue, rashes on the cheeks and nose, body pain and more.

"Be persistent, and if you have symptoms see your doctor especially if you have family or family members living with it," he said.

For Payne, lifestyle has changed, including with her friends. Despite her losing some her friends along the way, she mentioned the importance of having a strong support system.

“It lands for people to believe that maybe you’re being irresponsible or undependable but it's not the case you just never know when it's going to hit you," she said.

Payne said her family takes this issue seriously because of the loss of her sister. They wear the color purple, which symbolizes lupus daily to be an advocate for the disease.

No matter your race, gender or age, Payne said people with Lupus are all warriors; they should strut their purple pride proudly.