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Upstate activist says more resources are needed to fight lupus

Kathleen Arntsen was captain of the Colgate University rugby team when lupus came crashing down on her.

“It cut me down in the prime of my life,” Arntsen told a crowd gathered last month for a Lupus Alliance of Upstate New York dinner in Buffalo.

It took her awhile before doctors diagnosed her with the chronic autoimmune disease in which the immune system designed to help keep us healthy instead goes on the attack. It can strike any part of the body. In Arntsen’s case, it was mostly her digestive tract. Her condition brought on excruciating muscle and joint pain. She became more sensitive to sunlight. She could sleep for hours, and still wake up exhausted.

Lupus isn’t contagious. It is more prevalent than AIDS, sickle cell anemia, cerebral palsy, multiple sclerosis and cystic fibrosis combined. Research is limited, treatment complicated, and prospects for those who have it uncertain.

It’s why Arntsen and others in the national lupus patient advocacy community will push hard during the coming months to raise awareness of the disease, and bring greater emphasis on finding better treatments and a cure.

They will do so by encouraging all of those with lupus and related diseases to fill out an online Lupus Patient-Focused Drug Development survey, as well as attend a Patient-Focused Drug Development meeting Sept. 25 outside Washington, D.C., to provide input on advanced drug development by engaging FDA officials and drug developers.

Those who plan to attend the meeting must fill out the survey by July 1; others by Aug. 1. Find the survey and details about the meeting at lupuspfdd.org.

Kathleen Arntsen, left, and Assemblywoman Crystal Peoples-Stokes, right, recently received Lean Forward awards from the Lupus Alliance of Upstate New York. They were presented in Buffalo by Judith Christian, center, executive director of the alliance.

Arntsen lives with her husband, David, in Verona, central New York. She is president of the Lupus and Allied Diseases Association, which is leading the effort with the Lupus Foundation of America and the Lupus Research Alliance.

“Lupus is financially, emotionally and physically devastating. It’s like swimming with sharks,” Arntsen said during her keynote talk May 20 at the Lupus Illumination dinner, in the Barrel Factory banquet hall in the Old First Ward.

After 35 years with the condition, she takes 42 medications a day, even though she doesn’t look sick. She’s been unable to eat fruits and vegetables for 19 years because she can’t digest them properly. The unpredictability of the disease can make it hard to consistently focus, work and engage in everyday life.

“Sometimes it’s a victory to get out of bed, shower and get into my pajamas,” she said. Someone with lupus, she added, “can only hope they see a physician that takes them seriously.”

Despite setbacks, Arntsen said those with her condition can lead “a pretty good life” if they can become educated, proactive and nurtured by a strong support team.

Meanwhile, she and other lupus awareness advocates will continue to work for affordable, accessible treatments and more money for research.

For more information about lupus and services upstate, visit lupusupstateny.org.

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