AUBURN — A group of participants crowded Exchange Street outside of Auburn Public Theater Sunday morning at the inaugural Walk to End Lupus in Auburn. Together, decked in purple "End Lupus" T-shirts, participants were about to start their trek down Genesee Street.
While many of these walkers already knew of lupus and its chronic symptoms, as they suffer from the (so far) incurable disease or know someone that does, they gathered together to bring awareness to those who may have never heard of it.
According to the Lupus Foundation of America, roughly 1.5 million Americans suffer from a form of lupus, and even though the disease doesn't get as much attention as others, it can be painful and economically challenging.
"This disease needs more attention," said Samantha Durant, who was among Sunday's purple brigade. She said her mother, a lupus patient, has to call out of work often because of muscle pain. "It's tough because when you call out of work, that's money you're missing ... and lupus isn't cheap."
Until her own diagnosis about five years ago, Rosemary Bell didn't know what lupus was.
A 2008 study by the American College of Rheumatology found that on average, a lupus patient spends about $13,000 a year for medication and treatment. The study also found that the average amount of money they lose from not working is about $8,000 a year.
Rosemary Bell, who organized Sunday's walk to raise funds to find a lupus cure, suffers from systemic lupus erythematosus, the most common type of lupus, and perhaps the most severe form as it can affect a number of vital organs. She gets chemotherapy injections weekly and infusions by the month, all on top of a "shoebox" of medication.
"Every three or four treatments I get, after the second or third, the doctor is fighting for me to get more," she said.
While lupus patients are continuously fighting the disease, they're also fighting for their treatment. Bell said that because lupus is a pre-existing condition, getting help from insurance companies can be a battle of its own.
"We basically have to have everything pre-authorized," Bell said. "And if they turn us down, we can't get our treatment."
This was Auburn's first walk to end lupus, and it won't be the last, Bell said: "I plan on renting (Auburn Public Theater) every year."