Living with Lupus

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One patient’s journey from diagnosis to symptom management

June 4, 2014, was a milestone day for Capital District resident D’Amber Pounds. She hadn’t felt well – enduring pain and joint swelling, among other ailments. While a cold had subsided at the beginning of the year, these other problems hadn’t. Test results were negative, but blood work showed troubling signs.

Aixa Toledo-Garcia, MD

That’s when she was referred to Aixa Toledo‐Garcia, MD, Managing Partner, Chief Medical Officer and Laboratory Director for The Center for Rheumatology in Albany. By that time, she also was experiencing numbness, resulting in difficulty grasping things. After more exams, labs, and lots of questions from Dr. Toledo‐Garcia, Pounds was diagnosed with lupus.

As Pounds was learning, lupus is a chronic and non‐communicable autoimmune disease. In essence, the patient’s immune system fails to distinguish self from foreign, releasing antinuclear antibodies that attack the body’s own tissues or organs. About 1.5 million people have lupus in the United States, with an estimated 16,000 added each year. Worldwide, that number reaches 5 million. This life‐changing disease most often develops in people between the ages of 15‐44. According to the U.S. Department of Health and Human Services, it is nine times more prevalent in women; of women, lupus is likely to present in women of color two to three times more often.

For Pounds, finding out the reason for her ill health was positive, but the news came with a flurry of thoughts and questions. “That ‘this is forever’ was sinking in,” she said. She also had questions: How did she acquire lupus? How would it affect her life, and how should she inform her family of its impact on activities and her health?

Research is ongoing as to why lupus occurs in some people and not others. Scientists have found certain genes associated with it, genes that are not seen as a direct cause but rather contributors to susceptibility when other triggering environmental factors occur – infections, certain medications, viruses, or sun exposure, for example. About 70 percent of cases are systemic, and for about 50 percent of those patients, a major organ or tissue will be affected. Approximately 10 percent are cutaneous, focusing on the skin; other cases may come from high doses of certain medications for those susceptible. There are rare cases of neonatal lupus affecting babies.

A challenging disease to diagnose, lupus presents itself with “many faces and many variants,” Dr. Toledo‐Garcia says. “It’s solving a puzzle.” Different symptoms occur in different people, ranging from mild to severe, appearing in flare‐ups, and going into remission at times. It also can affect different parts of the body – skin, muscles, joints, heart, lungs, or kidneys, among others – for different patients. Adding to the puzzle effect, lupus may be mistaken for other diseases, such as Sjogren’s, another autoimmune disorder, or these other disorders may accompany lupus. The earlier the diagnosis, the earlier steps can be put into place to manage the disease, ultimately employing necessary medical care, monitoring, and attention to life choices to help ease painful symptoms.

The first appointment may involve detailed blood tests, urinalysis, biopsies, a physical exam,

and many, many questions, Dr. Toledo‐Garcia says. The doctor’s detective work also involves checking for rashes, asking about sun sensitivity, and looking for hair loss and ulcers in the mouth. She asks the patient to list and bring in any prescriptions, over‐the‐counter medications, and supplements to take into account their possible effect. The age of the patient also should be considered, Toledo‐Garcia notes – a post‐menopausal woman and a teenage patient experiencing hormonal changes can be affected differently, for example.

Dr. Toledo‐Garcia encourages a patient to bring a close relative or friend to the appointment to aid in absorbing the information. She plans a second visit closely after that detailed first meeting to see how the patient is doing. Periodic visits are scheduled to monitor medications and conditions.

Life choices are important for lupus patients – taking protective measures in sunlight and limiting exposure; avoiding certain symptom‐triggering foods; curbing stress; and ensuring adequate sleep all can help to sidestep flare‐ups. Fatigue is a common element of lupus, so mindfulness of thoughts, body, and environment can also be helpful. Since her diagnosis, Pounds has adopted a healthy diet and modifies her food choices to best work for her condition. She also exercises regularly and strives to avoid stress: “I try to keep a positive, upbeat attitude.”

The lupus patient not only seeks to avoid triggers but also becomes attentive to warning signs of an impending flare‐up, to take steps to ease the situation when mild or, as necessary, get treatment quickly for more severe flare‐ups.

In a survey of the Lupus Foundation of America (lupus.org), titled UNVEIL: Understanding the Impact of Lupus, pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) were identified as the most difficult parts of coping with the autoimmune disease.

Both Pounds and Dr. Toledo‐Garcia emphasize the value of building family awareness so the patient has the support and an understanding that there may be a need to modify activities. Likewise, it is important for employers to become educated on lupus.

Continuing education by primary and healthcare professionals is valuable not only to help identify potential lupus cases but also to distinguish and address medical conditions that are not lupus‐related but presented in their lupus patients.

Pounds is active with the Upstate Lupus Alliance (lupusupstateny.org), volunteering to educate patients, families, and the public on the nature of lupus and the need for continued research. Last month, she and colleagues in the Alliance and other organizations were at the Capitol in Albany lobbying policymakers for funding. In addition to meeting and working with others to advocate for lupus patients, she recently had a chance conversation in a restaurant with someone who happened to have lupus. She says it was a wonderful opportunity to share information on resources and networking, connecting with other people with lupus and their families being so important to her.

“The public needs to better understand the challenges people with lupus and caregivers face on a daily basis,” The Lupus Foundation said in an announcement of one of their patient surveys. “The more we know, the better we can support those living with lupus.” Pounds adds that this acknowledgment and acceptance involves seeing everyone as an individual with and beyond lupus: “This is me.”

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