UC benefactors Michael Luggen, MD (left), and Evelyn Hess, MD, will work with internal medicine chair Bradley Britigan, MD (right), and William Ridgeway, MD (top middle), immunology division director, to help develop a lupus center at UC.
A world traveler and renowned physician-scientist, Evelyn Hess, MD, has seen nearly every autoimmune disease—from rheumatoid arthritis to Behcets disease and relapsing polychondritis. And thanks to medical advances and education, she is familiar with the cause of each of these diseases, not to mention the symptoms and treatments.
So, it might come as a surprise that despite having over 40 years of experience under her belt, Hess is still baffled by one “mysterious” disease that she says, “is a researcher’s biggest challenge”: systemic lupus erythematosus.
A complex, unpredictable disease in nature, but common enough to be found in every country and ethnic group, lupus is an autoimmune disease that’s been around for decades, yet little is known about its causes.
“Physicians don’t like not knowing about a disease,” says Hess, professor emeritus of medicine at UC. “Lupus is complicated, devastating and affects people during the prime of their lives. We have studied potential causes—from chemical hair dyes to environmental triggers—and still can’t come up with a specific cause.”
To help physicians better diagnose the disease and improve treatments, Hess and colleague Michael Luggen, MD, have recently made monetary gifts to UC to help fund lupus research.
In December 2008, Luggen, a professor of medicine at UC, made an initial $10,000 gift to establish the Evelyn V. Hess, MD, Endowment Fund for Lupus Research (Hess Fund), which will directly support lupus research, education and patient care.
“I wanted to do something that would honor Dr. Hess and her work, and help shed more light and focus on this important, growing disease,” says Luggen. “Dr. Hess is a mentor to all and very insistent that we do something about lupus.”
Hess is so insistent that she followed Luggen’s lead this past spring by adding $130,000 to the fund that will forever bear her name.
Their gifts are now only the beginning of what’s to come for lupus research at UC. Once the Hess Fund reaches $2 million in market value it will become the Evelyn V. Hess, MD, Endowed Chair of Lupus Research.
“Our goal is to attract a leader in lupus research and patient care who will help us develop a nationally recognized lupus center,” says Luggen. “We are envisioning a specialized clinic for systemic lupus erythematosus where patients can get, in one place, outstanding care from a number of knowledgeable specialists who are needed to optimally manage the disease.”
Although it’s hard to pinpoint exactly how or why lupus develops, researchers have classified it as a chronic autoimmune disease characterized by inflammation of various parts of the body, especially the tissues of the skin, joints and kidneys. Lupus causes the immune system to overact and attack a person’s normal organs and tissues, causing periods of flare-ups and remissions, which eventually leads to permanent organ damage.
The disease strikes mostly women of childbearing age (15– 44), although men, children and teenagers are known to have developed the disease as well. African-Americans are two to three times more likely to be affected by the disease.
The Lupus Foundation estimates that at least 1.5 million Americans have the disease, but experts have serious concerns over the number of unknown cases due to the lack of knowledge and awareness of the disease.
And perhaps that’s the most frustrating part for scientists and physicians alike.
“We know that roughly one out of every 200 people is affected by lupus,” says Hess, a member of UC’s faculty since 1964. “However, because there is little research on the disease, many physicians don’t know about it or know how to diagnosis it.
“Therefore, people are being treated for other diseases when it’s really lupus. But lupus is difficult to diagnose even for experts in the field as it oftentimes develops as a cumulative process over a period of years and there’s no single definitive test to diagnose it.
“It’s only when it’s progressed to a certain stage that we know for certain it is lupus,” says Hess.
“Lupus is a medical challenge,” she continues. “We are just in the early stages of understanding this disease. My first patient had lupus, but at the time we didn’t even know what lupus was. All we knew was that she had joint pain and a skin rash, but we didn’t know what to call it or how to treat it.
“Since then we have advanced our knowledge through research, but there are still a lot of questions that need to be answered.”