Bernd Brägelmann
X-ray of the hand in rheumatoid arthritis

Autoimmune Diseases Affect Millions

August 31, 2009
by Emily Coakley
Karla Lindula of Seattle woke up one day with such severe pain in her hands that she couldn’t hold a hairbrush. “There was no warning for this. It came on suddenly and unexpectedly. Over the course of two to three weeks, it worsened and I went into the doctor’s to get checked out,” Lindula said. Tests indicated she had lupus, an autoimmune disease. After a year of treatment, her doctors determined she actually had a different autoimmune disease, rheumatoid arthritis.

Autoimmune Diseases and Their Prevalence

Lindula, who was diagnosed in 2004, is one of up to 50 million Americans who have one or more autoimmune diseases, according to the Society for Women’s Health Research. Women with autoimmune diseases outnumber men nearly three to one, and it’s the eighth leading cause of death for women ages 15 to 64, according to the society.

Autoimmune refers to the body’s immune system attacking healthy cells instead of invading cells, as it is designed to do, explains Children’s Hospital Boston. No one is sure why a body’s immune system would turn on itself, nor why immune systems sometimes target a specific organ or the entire body.

Some diseases, such as multiple sclerosis or endometriosis, may be familiar, but others, such as Tolosa-Hunt Syndrome and pemphigus, probably aren’t.

According to the American Autoimmune Related Diseases Association (AARDA), “Individually, autoimmune diseases are not very common, with the exception of thyroid disease, diabetes, and systemic lupus erythematosus (SLE). However, taken as a whole, they represent the fourth-largest cause of disability among women in the United States.”

No one knows why women are disproportionately affected with autoimmune diseases, though it is possible hormones are involved, the AARDA says. Pregnancy can cause some diseases to improve or get worse, and other diseases occur after menopause.

People with one autoimmune disease tend to be diagnosed with others. Lindula was diagnosed with Reynaud’s Phenomenon about two years after her pain started. Lisa Copen, 39, of San Diego, was diagnosed with RA 15 years ago, then developed fibromyalgia a few years after.  

The AARDA has a complete list of the conditions that are considered autoimmune diseases.

Autoimmune disease treatment varies by condition, and one approach is managing the effects of the disease, according to the site Another is to suppress the body’s immune system with medication so it’ll stop the attack. But such approach also has problems.

Says Medhelp: “Unfortunately, these medications also suppress the ability of the immune system to fight infection and have other potentially serious side effects.”

Coping With an Autoimmune Disease

The Web can be a great place for people with autoimmune diseases to learn more about their condition and connect with others who are having the same experience. Several diseases, such as celiac, have organizations and sites dedicated solely to them.

AARDA offers tips to help people get diagnosed properly, such as keeping a list of symptoms—in order of concern to you—and asking doctors about their experience with autoimmune diseases.

For Copen, coping with her autoimmune disease meant establishing Rest Ministries, which she describes as “the largest Christian organization that serves the chronically ill.” She’s also established National Invisible Chronic Illness Awareness Week, “to help others know they are not alone in their invisible pain,” she said. 

After Stephanie Cion, 32, of New York, was diagnosed with chronic inflammatory demyelinating polyneuropathy in 2005, she had to leave a job she loved. A medical emergency led her to start a new company, WellAlarm. The company makes medical alert pendants and other jewelry, offering a twist on medical alerts. If someone with a WellAlarm pendant or bracelet is unconscious, a paramedic can call a number and use a unique code on the charm to gain that patient’s medical information.

“I truly believe that starting my company, WellAlarm, has helped in my recovery. It gives me a sense of purpose and reason to push through the worst days,” Cion said.

Health Web Guides

To learn more about some specific autoimmune diseases, such as diabetes, read the findingDulcinea Diabetes Web Guide. The guides link to sites to help you learn about diagnosis, treatment and research, as well as where to find support online. Other guides include arthritis and multiple sclerosis. While fibromyalgia is not considered an autoimmune disease, it does tend to occur in people who already have one.

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