Myrl Jeffcoat myrlj@jps.net

Thanks to Gina for sending us the following article...Myrl

Autoimmune Disease: When the Body Fights Itself

By Judy Moeckel

They tend to strike people in early adulthood, in the "prime" of their lives. They strike women far more often than men. Researchers don't yet know exactly what causes autoimmune diseases, but they are moving in that direction.

Cindy Harward of Durham, who has lived with lupus disease for many years, likens the autoimmune reaction to the body "rejecting itself." The immune system is overactive, she says, the opposite of what happens with AIDS, where the immune system is suppressed or nonfunctional.

"The word "auto" is the Greek word for self. The immune system is a complicated network of cells and cell components (called molecules) that normally work to defend the body and eliminate infections caused by bacteria, viruses and other invading microbes. If a person has an autoimmune disease, the immune system mistakenly attacks self, targeting the cells, tissues and organs of a person's own body. A collection of immune system cells and molecules at a target site is broadly referred to as inflammation."

The term "autoimmune disease" encompasses a large and mind-boggling variety of conditions, including multiple sclerosis, Crohn's disease (a serious gastrointestinal disorder), rheumatoid arthritis; systemic lupus erythematosus (commonly called lupus); myasthenia gravis; certain forms of asthma, diabetes, dermatitis and psoriasis, hepatitis, anemia and cirrhosis and Addison's disease, to name but a few.

Besides providing a laundry list of disorders believed to be caused by the body preying upon itself, the Merck Manual of General Medicine has a category for "other inflammatory, granulomatous, degenerative and atrophic disorders" for which there is "no reasonable alternative explanation." This would include, for example, fibromyalgia, which involves muscular pain and tenderness, often both acute and diffuse, but where there is no clear evidence of tissue damage.

Autoimmune diseases often follow a pattern of disease "flare up" or activity, followed by "remission" or inactivity, when symptoms diminish. Damage (to tissues, joints, etc.) done during flare ups usually persists, and the disease is rarely if ever "cured."

How do autoimmune diseases work? Daniel Doty of Durham, who was Chairperson of the Board of Directors of the Connecticut chapter of the National Multiple Sclerosis Society from 2001 to 2004 and is still actively involved in the organization, says a genetic "marker" for MS has not been discovered—yet—but it appears some people may be predisposed by family history.

According to the NIAID website, the genes people inherit contribute to their susceptibility for developing an autoimmune disease. Diseases such as psoriasis can occur among several members of the same family, suggesting that a specific gene or set of genes predisposes a family member to the condition. They note that, "individual family members with autoimmune diseases may inherit and share a set of abnormal genes, although they may develop different autoimmune diseases."

Cindy Harward says a marker is "suspected' in lupus also, but there needs to be a trigger such as medications, environmental factors, or a fever, before the disease manifests itself. Sheldon Paul Blau, MD, author of Living with Lupus (1993), agrees that there are "suggestions of…subtle genetic factors" with lupus, and states that autoimmune diseases like lupus are NOT contagious, nor are they related to diseases such as AIDS or cancer.

"While there may be an infectious agent or agents involved in lupus, it is not an agent that can carry the condition from one person to another, like the measles virus."

Nor are diseases such as lupus passed on through sexual activity; in the late 1970's, Blau says, before the AIDS virus was identified, it was rumored that "permissive sexual mores" were causing the spread of lupus disease. Sadly, the rumor mill hurt people with both diseases.

Cindy Harward was diagnosed with lupus about 32 years ago. While in college (she was a physical education major), she was working at a playground, and suddenly broke out in a bad rash. The first dermatologist she went to thought it was an allergy to the sun, and recommended that she use sunscreen and avoid the sun. Harward also had joint pain, one of the symptoms of lupus, but did not think to mention it.

Eventually she saw another dermatologist, who took one look at her rash, heard about her joint pain, and suspected lupus. Blood tests confirmed the diagnosis. Harward says diagnosis is not always this clear-cut.

Lupus can impact almost any part of the body, including the central and peripheral nervous system, the heart and lungs, kidneys, musculoskeletal structures, gastrointestinal and reproductive systems, blood (usually clotting problems), and skin (manifested as extreme sensitivity to the sun, a "butterfly" rash on the face, and/or lesions). Most people experience symptoms in only a few of the body's organs.

Across the years since her lupus was diagnosed, Harward has adjusted her career to meet her changing physical condition. Her first move was to change from physical education to health education. Eventually, she obtained a Master's degree in adaptive physical education. "I loved it, but the demands were too great," she says. She moved into consulting with schools and businesses, including the Wheeler Clinic in Plainville.

Extreme fatigue has been an ongoing problem, as have the ongoing effects of tissue damage, which affects her joints and connective tissues. Harward's ligaments and tendons rupture easily, causing her to need many surgeries over the years. One time, she says, she was simply picking up a big of oranges and ended up severing a tendon, as if it were "spaghetti." These connective tissue problems have a domino effect, resulting in orthopedic damage to bones and joints. Harward suspects that the medications she has taken over the years, including prednisone, may have contributed to the damage.

Despite the challenges, Harward maintains a positive outlook. "I get into trouble because I push it," she says. I'm not the type to get this!" An energetic and outgoing person, she knows she has to plan her time carefully. For the past eight years, she has worked at Ameritage Realty on Route 66 in Middlefield. The flexibility of the job suits her physical needs, and she is very happy there.

Strong support from family and friends has helped Harward cope successfully with lupus. Besides her family, she says that the "man in her life"—Lou Torelli—has been a "rock" for her for nearly 25 years.

Several times a year, she visits classes at the medical school at the University of Connecticut, putting a human face on the disease of lupus. She notes that October is Lupus Awareness Month; the annual Lupus Walkathon, sponsored by the Connecticut Chapter of the Lupus Foundation of America, will take place on September 25, at the MDC Reservoir on Farmington Avenue in West Hartford.

The chapter also will sponsor a golf tournament on May 21, and on April 1, the foundation will sponsor Lupus Alert Day; their slogan is "Don't Be Fooled by Lupus."

A wealth of information is available at the Lupus Foundation of America's website www.lupus.org.

As an article in the newsletter of the Maryland Lupus Foundation says, "living with lupus can feel, at times, like an endless tightrope walk on a bad day at the circus." But, as the article's author Jeri Falk says, "just as we each have our own unique losses, we also have our own special ways of coping, of regaining our balance, of surviving."

Cindy Harward knows her lupus won't go away, but she says she is prepared to face the upcoming chapters in her life. Her outlook is positive, which is possibly the best medicine around.

Next time: multiple sclerosis, research in autoimmune diseases and resources.