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April 2, 2009 – Vol. 3 • No. 8
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Chronic condition still a mystery

Their stories on lupus couldn’t be more different.

Robin Sanzi knew from the start that something was terribly wrong.

The sudden pain and swelling in her hands and wrists were so bad that she couldn’t zip her pants or open a bottle of water. “Something wasn’t right,” she recalled.

Tests were done, and when the results came back a little askew, Sanzi was off to a specialist. The diagnosis was fairly quick in coming: Sanzi had lupus.

“I hit the panic button,” she said. “I thought I was going to die.”

For Cherelle Payne, it took about two years before doctors determined she had the chronic condition. She suffered from some of the common warning signs: fever, swelling of the feet, a rash on the face, blood problems and fatigue. She was even hospitalized at one time for kidney problems.

But for years before her diagnosis, Payne’s lupus-related incidents, or “flares,” appeared only during the summer months and not when she was attending school from fall to spring.

And that is part of the problem with lupus — it’s very difficult to detect, and even when detected, symptoms of the disease can appear and disappear.

In a strange way, after years of going back and forth from one doctor to another, Payne admitted she was glad to hear the words.

“I felt relieved to finally put a name on what was happening,” she said.

She was 21 years old at the time.

Lupus is neither curable nor preventable. For unknown reasons, it occurs more frequently in women between the ages of 15 and 45, and is more prevalent in women of color, especially African Americans. More troubling, the complications of lupus tend to be more severe in minorities, who also have a higher death rate than white women.

The most common and serious form of the disease is called systemic lupus erythematosus, or “lupus.” It can result in kidney failure — one of the leading causes of death among people with lupus. It impacts the central nervous system and causes headaches, dizziness and behavioral changes. It can lead to pneumonia and inflammation of the blood vessels.

Bone tissue can die due to a compromised blood supply, and pregnant women with lupus suffer a higher rate of miscarriages.

Most serious is the impact on the heart and cardiovascular system. According to the Lupus Foundation of America, women with lupus have as much as 10-times increased risk of coronary heart disease compared to the general population. Inflammation from lupus can lead to inflammation of the heart itself, the membranes surrounding the heart, as well as the arteries that feed the heart and brain. This can increase the risk of heart attack and stroke.

Despite all the damage it can cause, lupus remains one of the most difficult diseases to detect. Dr. Patricia A. Fraser, a rheumatologist with a clinical interest in lupus, is the chair of the board of directors of the Lupus Foundation of New England. Rheumatologists specialize in treating arthritis and other bone, joint and muscle disorders, including lupus.

“Lupus is a syndrome — a combination of many symptoms that, unless they occur together, are not specific for lupus,” Fraser explained.

The problems don’t stop there. “Unless a health care professional is thinking about the diagnosis, it can be overlooked,” she said.

No one has come up with a specific test as yet.

“The antinuclear antibody test is the best screening test we have,” she said.

But those test results can only “suggest” lupus; they can’t confirm it. Further complicating matters, symptoms are frequently episodic. “A person might be bedridden with a symptom and by the time she gets to the doctor, it is gone,” Fraser said.

No two cases are exactly alike and the symptoms can vary widely. They can come on suddenly or slowly, be severe or mild, temporary or permanent. At times the symptoms appear so slowly that no specific pattern emerges. According to the Lupus Foundation of America, it can take as long as 10 years to accumulate enough evidence to confirm a diagnosis.

The symptoms are often attributed to other maladies. The joint pain resembles other causes of inflammatory arthritis such as rheumatoid arthritis. Recurrent fever symptoms may be mistaken for the flu. Often lupus is not diagnosed until the symptoms are severe or several manifestations occur simultaneously.

Robin Sanzi just knew she was going to die. One friend had already died from lupus. Another was disabled.

Fortunately Sanzi, 48, was diagnosed with a relatively mild case. Her most common symptom is photosensitivity, or reaction to the sun.

“My skin becomes very red,” she said. Yet, that seemingly minor affliction interferes with Sanzi’s job, which requires her to work outside, even in the heat of August. At times she merely covers up, wearing a hat and long sleeves. Other times she is forced to take medical leave.

There are other symptoms. She notices that she bruises easily and that the bruises don’t go away quickly.

“Sometimes they can linger for over a year,” she said. “Even people touching you can cause a bruise.”

For the most part, Sanzi controls her condition well. She is on medication and gets a checkup every three months. She visits the dentist every four months to have her teeth cleaned and her gums checked. People with lupus are prone to inflammation of the gums and mouth sores.

She gets her eyes examined every year, since the medication she is on may damage the retina. She keeps track of her blood pressure and cholesterol, and exercises regularly to ward off the cardiovascular problems so common with lupus.

Payne has a more severe case of lupus. But after her diagnosis, she went through a fairly innocuous period for three years.

That changed in 2005 when she traveled to Mexico. She got a pain in her hip that she thought was the result of walking too much. Although the pain got worse, she stayed in Mexico and promised to tell her doctor during a regularly scheduled appointment back in Boston.

She made it back to Boston, but not to her appointment.

“I went to the emergency room instead,” she said. The doctors discovered a blood clot. According to Payne, a small piece had entered her lungs. Patients with lupus sometimes make antibodies that enhance the body’s tendency to form blood clots. Payne spent two weeks in the hospital and was given blood thinners, which she still takes.

For the next three years, Payne’s condition was manageable. She still suffered the usual headaches and joint pain that come with lupus. And fatigue. “Lupus makes you so tired you don’t even want to get up to go to the bathroom,” she said.

Then, in 2008, she suffered a stroke. Fortunately, the stroke has left no permanent damage, but Payne has been unable to work since then.

Payne is 29 years old and considers herself blessed. She married her high school sweetheart and has the support of a loving family and friends. Wise beyond her years, she says she takes everything in stride.

She is on lots of medication, including steroids and blood thinners. And has the side effects to prove it — puffy face, fluctuating weight and stretch marks that she refers to as “tiger stripes.”

One thing is certain — lupus has not dampened her spirit.

“You can live with lupus,” Payne said. “Don’t let this stupid illness scare you. … I’m going to deal with it. It’s not going to deal with me.”

Cherelle Payne (right) attributes her ability to cope with lupus to the support of her husband, Daren. Payne suffered her first symptoms of lupus when she was a 19-year-old college student.

Patricia A. Fraser, M.D., M.P.H.
Chair, Board of Directors
Lupus Foundation of New England

Photosensitivity, or reaction to the sun, is Robin Sanzi’s major complication with lupus.

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