The stresses of living with lupus

BALTIMORE – “Sometimes I feel like someone is stabbing me. Sometimes I get this burning feeling, like someone has a hot iron on me,” said Shannon Blair, a lupus fighter.

Blair suffers from a long list of symptoms, but from the ages of 14 to 22 she had no idea why.

“I'm getting ulcers in my nose. Ulcers in my mouth,” Blair said.

She also had ulcers in her eyes, memory loss and joint pain.

“I wake up and feel like an old person, like I can't move. I get pneumonia. When I go to sleep I feel like I have narcolepsy, which is new to me,” Blair said.

In addition, there is a strong sensitivity to light. Blair says that standing outside in the sun for too long is painful.

“I thought my pain was the same as my dance and soccer friends, but it wasn't. It was much worse. And then my hair started falling out. They just kept saying I was fine. Everything was OK. So why is my hair falling out,” Blair said.

After consulting several specialists, Blair finally received an answer.

“Finally, they said I had lupus. From then on, it took about eight years for me to get the diagnosis. Right now the national average is six years,” Blair said.

Approximately 1.5 million Americans, like Blair, suffer from lupus, a disease that currently has no cure.

“You're just sick and you don't know why. You go to countless specialists, pay co-pays and take medications you shouldn't be taking,” Blair said.

90% of people with lupus are women.

“Especially black and Hispanic women. It doesn't get as much attention as it should. People say, 'You don't look sick, you look great,' but inside you're in pain,” Blair said.

That's why Blair is an ambassador for the Lupus Foundation of America, pushing for more research funding, for more women of color to participate in clinical trials, and for giving a voice to what is often referred to as an “invisible disease.”

“They're the only ones who know how frustrating it is when you talk to a doctor and they turn you away. They're the only ones who know how hard it is when you spend money on medication and have to pay for it through insurance. So this community is very, very important,” Blair said.

The Walk to End Lupus Now will take place Saturday at Canton Waterfront Park. The goal is to raise money for research and support people living with the disease. WMAR is a media partner for the event.