NEWTON - After spending much of her adult life shuttling in and out of hospitals with health problems ranging from kidney infections to excruciating joint pain, Annemarie Casey said she was relieved, finally, when she was diagnosed with lupus in 1981, four months after her first pregnancy ended in a miscarriage.
Casey was a 25-year-old nurse in West Hartford, Conn., at the time of her diagnosis. She remembered exhaling and thinking, "Oh, thank God, I don't have cancer."
Lupus? She could deal with having a chronic auto-immune disease.
"I kind of knew a little about lupus," she said. "But not much at all."
For the last 28 years, Casey has gained incredible insight through her trials and tribulations. She has delicately managed her pain threshold with prednisone, the only approved pharmaceutical drug known for the treatment of lupus. The steroid can lead to harmful side effects. It can suppress patients' auto-immune system, leaving them vulnerable to other health problems, such as loss of bone density, which, in Casey's case, led to right hip replacement at age 30.
Casey is ambulatory now but still has hip, neck, and back pain. She's had two subsequent surgeries on her right hip, the latter of which took place last year after she had suffered seven dislocations.
So after living with lupus for nearly three decades with a remarkable upbeat attitude and an indefatigable spirit, Casey, the 53-year-old wife of Mount Ida College women's basket ball coach Jack Casey, was an ideal advocate. Appropriately, she kicked off "Passionate Purple" week, a slate of 13 women's basketball games among the Great Northeast Athletic Conference's 13-member Division 3 schools aimed at raising funds and awareness for the Lupus Foundation of America.
Wearing a symbolic purple ribbon pinned to her purple sweater, Casey addressed a jam-packed crowd at Mount Ida's Athletic Center during halftime of last Saturday's men's game against St. Joseph's College of Maine. As she stood behind a podium at midcourt, with microphone in hand, Casey's tiny but perky voice was barely audible at first. But by the end of her four-minute speech, Casey's powerful message had been delivered, leaving such an impression the crowd gave her a standing ovation.
"I would hope to convey to people that being diagnosed with lupus isn't a death sentence," said Casey, who gave birth to her only child, John, now 25, some two years after her diagnosis. "It's a chronic disease you can live with and, yes, it might have its ups and downs and it might not be a perfectly smooth road, but you can survive it, you can triumph over it, have children, and really have a full life.
"And that's so important."
"I still can't remember how it came up, but she shared it with me while I was watching her son practice with our boys' team," Price said when asked how he became aware of the disease. "We were talking and she said, 'I just came back from the hospital and I was diagnosed with lupus.' I didn't know how to react. Out of ignorance, I didn't know what it meant to have lupus. I mean, you hear about HIV, you hear about all those [diseases], but I didn't know what lupus was. I didn't even know it was a disease."
According to the Lupus Foundation of America, about 7.1 million cases have been reported worldwide.
"And 90 percent of those affected are women, especially women of color," said Sandra Raymond, CEO of the Lupus Foundation of America. "The disease is two to three times more common among African-American, Asian-American, Latino, and Native American women. And we don't know why."
Raymond said more than 36 percent of lupus cases affect people between the ages of 16 and 34 and that women die from the disease at a rate five times higher than men. "The cost of lupus in direct and indirect expenditures is roughly $31.1 billion, and yet the National Institute of Health invests only $56 per person per year in research," she said.
Raymond indicated only one drug has been approved for the treatment of lupus since the Eisenhower Administration.
"So what are we using to treat this disease? We're using steroids that can cause bone loss and a whole host of other problems," Raymond said. "We're using chemotherapy over the course of a woman's life, which can make them sterile. In lupus, especially people with liver disease, any time they have a flare, chemotherapy is the standard. It destroys their immune system.
"What we're trying to do is achieve a more balanced immune system," she added. "In lupus, the immune system recognizes normal, healthy tissue as an invader, as if it were a bacteria or virus, and causes damage to that system that is hard to reverse. We have to find out why the immune system goes awry and begins to attack itself."
"As coaches of women, we've got to be sensitive to other issues and not just breast cancer, because there's a lot more issues out there and that was key for me to do lupus," said Price. "As an African-American male, I know that it affects my community in larger numbers, same with breast cancer. But this is something I thought we could support and I know the Lupus Foundation is very happy.
"When I told them about the idea, I know that they were very happy that someone reached out to them," Price added. "I'm sure they would have loved to have UConn do this, but I think, hey, the women and their families who have suffered don't care where the donations and the awareness comes from, as long as somebody is doing it."
Even if it starts at the grass-roots level of collegiate sports, far from the Division 1 spotlight. When the Simmons Sharks host the Mount Ida Mustangs tonight at 7 at the Holmes Athletic Center, it will mark the first time Casey and her husband will have met Price.
"We are so grateful to them," Raymond said. "Our donors are extremely loyal and new donors are finding us every day; they're finding us through our website, publications, and public programs. While there's been a little bit of a downturn in our present donors, they're being replaced by some of our new donors. We're 32 years old, but only in the past six or seven years have we really been able to make an impact on this disease."
With 20 companies now searching for new drugs to treat lupus, compared with the two she encountered when she joined the Lupus Foundation of America seven years ago, Raymond said, "There is more hope today for better drugs than at any time in the last 50 years.
"What we have to do is be activists," she added. "Everyone with lupus out there has to be their own empowered activist. That's why I'm so thrilled what the GNAC is doing, because as important as it is to raise funds for research, it's important to raise awareness.
"So we could not be more thrilled at what's going on. We commend them, we commend Tony Price and Annemarie Casey and the GNAC for what they're doing. We deserve the attention they're giving us because we're one of the underdog, underserved diseases in this country today."
Passionate Purple week
What: Great Northeast Athletic Conference women's basketball fund-raiser to benefit the Lupus Foundation of America
Who: Mount Ida at Simmons
When: Tonight, 7
Michael Vega can be reached at firstname.lastname@example.org.