Roberta Kracht has been an active member of the Morgan Hill community for more than 30 years, but she can never predict when she might suddenly be bedridden for half a day or more due to a chronic condition that she and about 1.5 million Americans suffer from.
Kracht, 64, was diagnosed with lupus in 2010, but she had been in pain for many years before that. The disease, for which there is no cure and about which little is known, can cause a variety of debilitating symptoms. For Kracht, she has rheumatoid arthritis and fibromyalgia, a condition that causes muscular and skeletal pain and fatigue.
“I don’t know what I’ll be able to do for the day,” Kracht said. “In five minutes, it comes over you and you have to go to bed. In the summer, when it’s really hot, I don’t go outside.”
She added that she can’t work at her private psychotherapy practice for more than a couple hours a day.
Other lupus patients—nearly half, in fact—end up suffering from kidney failure, added Erin Badillo, Executive Director of the Lupus Foundation of Northern California. Some other patients experience lung and skin ailments. Others can’t work at all and rely on disability insurance to make ends meet. Existing treatment options often make the patient even sicker.
But Kracht’s illness doesn’t stop her from trying to raise awareness of lupus, assist other patients and support funding for research for improved treatment options. Kracht is one of 12 volunteer members of the board of directors for LFNC, a nonprofit organization that works to advocate for lupus patients and raise awareness of the “invisible” disease.
“Roberta inspires a lot of our board members,” Badillo said.
May is Lupus Awareness Month, and Morgan Hill and surrounding cities are in the process of issuing proclamations to that effect. Kracht and Badillo, who sat down to talk about their awareness efforts recently at Kracht’s Butterfield Boulevard office, were at the state capitol in Sacramento in April to commemorate the declaration of May as statewide Lupus Awareness Month.
Lupus is classified as a “chronic autoimmune” disease that gives patients an “overactive immune system,” Kracht and Badillo explained.
“Whenever your cells feel threatened, they attack the other good cells, thinking they’re going to be harmful,” Kracht said.
Senate Resolution 65, presented by Sen. John Moorlach, passed with a 36-0 senate vote and seeks to bring greater awareness, understanding and insight to the devastating effects of lupus.
Also in attendance for the signing of the resolution April 25 were members of LFNC, the Lupus Foundation of Southern California and Lupus Los Angeles.
The City of San Jose proclaimed May as Lupus Awareness Month earlier this month.
“I’ve seen upfront the toll this disease takes on loved ones in my family,” said San Jose Mayor Sam Liccardo, who happens to be Kracht’s son-in-law. “The small but mighty team at Lupus Foundation of Northern California has done astounding work educating those affected by lupus while supporting external research. I commend Erin (Badillo) and her team’s efforts, and am confident that the most innovative community on the planet will discover a cure.”
Despite funding for research gaining momentum in recent years—resulting in the first drug developed specifically for lupus about four year ago—the disease, which is not contagious, remains an enigma. About 90 percent of diagnosed lupus patients are women, Badillo said. People of color are most likely to have lupus. These phenomena remain a mystery.
“It seems to be hereditary,” Badillo said. Kracht noted that her mother exhibited symptoms similar to those of lupus patients, but she was never diagnosed with the disease because it was unheard of at the time. Her mother died at the age of 34.
Kracht has lived in Morgan Hill with her husband John Kracht since 1985. Their seven children grew up in Morgan Hill. Although Roberta Kracht was diagnosed with lupus about six years ago, most patients are diagnosed in their 20s or 30s.
LFNC is a highly active organization that promotes and organizes numerous efforts throughout the year to support lupus patients, Badillo explained. The organization sponsors 21 patient support groups throughout northern California, and is working on starting more. They also hold two conferences annually in Sacramento, with the next one coming up May 21. These conferences are live-cast over the internet for those patients not feeling well enough to attend.
They have also instituted a “buddy program,” which is about a year old and matches new patients with longtime lupus sufferers who act as mentors, Badillo added.
On June 12, the “Drumbeat to a cure” 5K run/walk will take place at West Valley College in Saratoga. The event, sponsored by LFNC, is intended to raise awareness and funds for research.
“Awareness is making a difference,” added Kracht. She noted that earlier this month, the U.S. Congress appropriated $5 million to establish a special committee on lupus research. “It’s very interesting how this is growing so fast. We’re going to see some good things soon.”
For more information about lupus and LFNC, or to register for the June 12 5K, visit lfnc.org.
