BALTIMORE — "Sometimes I feel like somebody's just stabbing me. Sometimes I have this burning sensation where it feels like someone has a hot iron on me,” said Shannon Blair, a Lupus warrior.
Blair suffers from a long list of symptoms but from 14 to 22 years old, she had no idea why.
"I get ulcers in my nose. Ulcers in my mouth,” said Blair.
She’s also had ulcers in her eyes, memory loss, and joint pain.
"Waking up feeling like you're an old person, feeling like I can't move. I get inflammation in my lungs. Falling asleep, sort of like narcolepsy which is new for me,” said Blair.
Adding to the list, severe photosensitivity. Blair says, just standing outside in the sun for too long hurts.
“I thought the amount of pain I was in was the amount of pain that the rest of my fellow dance and soccer mates were in, but it wasn't. It was much worse. And then my hair just started falling out. They just kept saying you're fine. Everything is fine. Then why is my hair falling out,” said Blair.
After seeing several specialists, Blair finally received an answer.
"They finally said you have Lupus. So from that time, it was about eight years for me to get diagnosed. Right now, the national average is six years,” said Blair.
With no cure, Blair’s battle with Lupus is shared by around 1.5 million Americans.
"You're just sick and you don't know why. You're going to countless specialists paying co-pays, taking medications you're not supposed to be taking,” said Blair.
90% of people living with Lupus are women.
"Specifically Black and Hispanic women. It doesn't get as much attention as it should. People will say "You don't look sick, you look great” but in the inside you're in pain,” said Blair.
That's why Blair is an ambassador for the Lupus Foundation of America, she's pushing for increased funding for research, for more women of color to participate in clinic trials, and giving a voice to what's often called an "invisible disease."
“They're the only ones who know how frustrating it is when you speak to a doctor and they dismiss you. They're the only ones that know how hard it is when you spend money on medication and you're going through insurance. So that community is very very important,” said Blair.
The Walk to End Lupus Now is Saturday at Canton Waterfront Park. It's all in an effort to raise money for research and to support people living with the disease. WMAR is the media partner for the event.
