It’s a mysterious disease that often goes undiagnosed for years. Once a patient is diagnosed, they’ve often never heard of the disease, and neither have their family and friends. Yet lupus is a debilitating disease with many masks.
"We call it the invisible disease," Hui-Lim Ang, founder of Colors of Lupus, a local non-profit organization dedicated to "dispense, deliver and provide immediate physical services and support" for patients of lupus, as well as provide a safe place for patients to share their stories.
Lupus is an autoimmune disease that takes on several forms. Many who have lupus have been to at least four doctors to heal a host of ailments separately that lead to lupus as the disease attacks the skin, joints, the heart, lungs, blood, kidneys and brain, according to the Lupus Foundation of America. Lupus can be fatal, usually attributed to cardiovascular diseases, although with recent medical advances, deaths are becoming increasingly rare.
There are different types of lupus. Systemic lupus accounts for the bulk of cases at roughly 70 percent, which can cause problems in a major organ, such as the heart, lungs, kidneys or brain.
Cutaneous lupus, in which only the skin is affected, shows up in approximately 10 percent of all lupus cases.
Colors of Lupus estimates 13,500 people in Nevada are currently diagnosed with lupus. While lupus is a widespread disease, awareness of the disease lags behind many other illnesses, she said.
Lupus often mimics or is mistaken for other illnesses, making diagnosis difficult. Common complaints include fever, joint pains, muscle pains, unexplained fatigue and temporary loss of cognitive abilities.
"It imitates other diseases and it can be a long, long time before someone knows (they have lupus) and gets the right help," Ang said.
The non-profit began in 2007 and opened its doors in April 2008 at 2400 Tenaya Way. It began when Ang saw that the local support groups simply weren’t enough to fulfill the needs of valley residents with lupus.
"There is not much known about lupus," Ang said. "I saw a need and I saw how much it could help here."
Lupus or SLE (Systemic Lupus Erythematosus) is a chronic autoimmune disease that can affect any connective tissues of the human body, according to The Lupus Foundation of America, which estimates that 1.5 million in the United States have been diagnosed with some form of the disease. Of those, 90 percent are women. Lupus is usually diagnosed between the ages of 15 and 44.
The patient’s immune system attacks the body’s cells and tissues, resulting in tissue damage and often painful inflammation.
The quality of life is the underlying message of Colors of Lupus, Ang said.
"Our mission is to help reclaim the loss of quality of life that this disease has taken away from people," she said. "While LFA and others continue to look for a cause and a cure, we are trying to help. The point is people don’t realize how disabling this disease is."
More than half with lupus went undiagnosed for at least four years, according to a recent LFA survey. Almost half of those surveyed reported that they saw three or more doctors before obtaining a correct diagnosis of lupus, usually a rheumatologist, a medical specialist who treats diseases of the connective tissue. "What happened to the people of lupus, they have no where to go to," Ang said. "They have the support groups, but some are so sick they don’t want to come out. But if you give them a reason to come out and ways on how to cope with what they have and teach family members, then you build a true support network to help them cope and reclaim their quality of life."
Colors of Lupus has 77 members, 21 of whom suffer from lupus.
"We hardly see them because they are so sick," Ang said, however they benefit from the direct contact with doctors knowledgeable about the disease.
In 2007, local internist Jun Aragon, M.D., was invited by the Executive Director of Colors of Lupus – Nevada, to be one of the board members. He provides free medical consultations to patients with Lupus who are referred by the organization.
"There is no one specific cause of this condition," Aragon said. "Researchers have found evidence to support several likely possibilities, and some believe that the cause may vary from one person to the next."
However there is activity in the medical industry to remedy that, he said.
"Recent studies are focusing on the following: immune system dysfunction, genetic susceptibilities, environmental triggers, and hormonal influences," Aragon said.
Nonsteroidal anti-inflammatory drugs and antimalarials may be prescribed by the doctor to treat symptoms of lupus and keep flare-ups at bay.
"When flare-ups occur, they are treated with steroids," he said. "The doctor may also prescribe certain anti-rheumatic drugs in order to reduce the number of flares, the disease process, and lower the need for steroid use.
Chronic pain affects a large number of patients of lupus, which sometimes call for stronger prescription pain killers.
What can be frustrating for a lupus patient, and their partners, is that the disease is so unpredictable. After a flare-up, that can include something as serious as a stroke; a patient can go into remission for a decade or more.
A dose of education and early intervention can offer hope.
"With early diagnosis and treatment, over 90 percent of patients may survive for more than ten years, and many can live relatively without symptoms," Aragon said.
If your doctor suspects lupus, they will usually look for signs and symptoms of connective tissue damage and inflammation, as well as abnormal blood tests, he said. Lupus may be gene related as the LFA found 20 percent of people with lupus had a parent or sibling with lupus or may develop lupus. As a parent with lupus, the outlook is good in that only about 5 percent of children born to parents with the disease will get lupus.
Treatment is mainly symptomatic as there is yet no cure for lupus. It is difficult to determine the annual number of new lupus cases, or the number of individuals who die from health complications of the disease. However, due to improved diagnosis and disease management, most people with the disease will go on to live a normal life span.
Lupus is not understood well enough to be prevented, Dr. Aragon said.
"However, when the disease develops, quality of life can be improved through flare-up prevention and early treatment," he said.
A main change for most lupus patients revolves around their daily routine.
"Lifestyle changes play a significant role in the treatment of lupus," he said. "Exposure to sunlight, certain drugs and chemicals that are known to exacerbate the disease should be avoided. Dietary changes, towards a low fat, mostly strict vegetarian, wholesome diet, may also lessen the symptoms or even induce a remission."
Standard preventive measures, including screening for related medical conditions such as (cardiovascular disease, infections, osteoporosis, and cancer) may be necessary to deal with the increased risks due to the side effects of medications.
The Lupus Research Institute, the world’s leading private supporter of innovative research in lupus, recently announced Benlysta (bmumab), the first successfully tested new drug for lupus treatment in over 50 years, Dr. Aragon said.
"More research studies are being conducted in the hunt for solutions to this complex and dangerous autoimmune disease," he said.
Colors of Lupus hopes to be a big part of the solution, at least locally.
"As we grow we hope to be able to donate part of our proceeds to research," Ang said.