It is an autoimmune disease that can affect virtually any organ in the body. It causes inflammation of skin, joints, heart and kidneys along with causing chronic pain, severe fatigue, nervous system damage, seizures and many more maladies from mild to life threatening. Its name is lupus and, thanks to caring communities and medical research, advances are being made to help manage this debilitating illness.
Events such as Walk for Lupus Now – Sept. 29 at Fort Steilacoom Park – not only raise public awareness about the disease but also the funds to help give those with lupus and their loved ones hope and support. Pharmaceutical research to help manage lupus is making strides slowly but surely, but in the meantime those who live daily with the disease know that educating others can help greatly in getting a handle on its destructiveness, especially through early detection and proper medical care.
At Saturday’s walk, participants will have a chance to meet folks who know first-hand what lupus can do to one’s body and one’s life. Tacoma resident Marsha Osborn is one of those folks. Diagnosed with lupus in 1970, she is a vocal and dedicated activist eager to share her knowledge with anyone who has questions – and her shoulder with anyone who is suffering.
“Lupus has a mind of its own,” she said. “This is one of those diseases where everyone will have something similar and also things that are not in common. It’s not an easy disease to live with because there are so many variables and no two people experience it exactly the same.”
She noted that lupus shows no bias as to age, race or gender. “It hits anyone it wants. It has no bias or bigotry at all as to who it attacks.”
According to the U.S. Department of Health and Human Services’ Office of Minority Health, it is estimated that approximately 1,500,000 Americans and more than 5,000,000 individuals worldwide have a form of lupus, often manifesting in women between the ages of 15-45. In fact 90 percent of people with lupus are women. Eight of 10 new cases of lupus develop among women of childbearing age; however, women of all ages as well as men and children develop the disease.
The office goes on to state that lupus is two to three times more common among African Americans, Hispanics, Native Americans and Asian Americans – a disparity that remains unexplained. Specifically, lupus is three times more common in black women than in white women. It is also more common in women of Hispanic/Latina, Asian and American Indian descent. Black and Hispanic/Latina women tend to develop symptoms at an earlier age than other women. African Americans have more severe organ problems, especially with their kidneys.
“One of the biggest things to learn to live with is fatigue,” Osborn said. “I can be going 90 miles an hour and all of a sudden it’s like someone dumped a giant bucket of water over me and I have nothing left. Just going to the bathroom can be an effort. It gives no warning – it just hits you. Some days you get out bed and you can barely move because you hurt so bad.”
To get the word out about lupus and support people living with the disease, Osborn participates in a Tacoma support group for patients, family and friends of those living with lupus. The group meets at the Tacoma Humane Society at 2608 Center St. (top floor, far back room) on the first Saturday of every month from 1-3 p.m.
“We cover all aspects of the Tacoma area. It’s the only one in town,” she said.
Find and “like” the Tacoma lupus support group on Facebook by typing “lupus Tacoma” in the search box. For more information about lupus, visit http://www.lupus.org.
WHAT: Walk for Lupus Now
WHEN: Saturday, Sept. 29
WHERE: Fort Steilacoom Park
TIME: Check-in starts 8:30 a.m.
Runners start: 9:30 a.m.
Walkers start: 9:40 a.m. Distance: About 2.5 miles
Registration: $25 adult, children are free