Lupus Sufferers Seek Unlikely Alternative for Mysterious Illness

Courtesy of lupus.org via Twitter
Courtesy of lupus.org via Twitter

Lupus is known as “the great imitator” for its knack of masquerading as a number of other illnesses. It remains elusive, cloaked behind whatever body system it decides to target.

Joint pain, migraines, rashes, extreme fatigue, renal failure and fertility issues regularly plague lupus sufferers, of which 90 percent are women and three times as many are of African-American, Latino or Asian descent.

Like all autoimmune diseases, lupus misdirects the immune system to attack the organs and tissues it was meant to protect. However, lupus spares no body system.

As a result, patients are prone to seek out a range of specialists for their ailments but can be misdiagnosed with fibromyalgia, arthritis, chronic fatigue syndrome or, dismissively, old age.

For countless other women, lupus can slip under the radar altogether.

This was the case for Nika Ward, an African-American government publication editor in her mid-30s.

It wasn’t until she and her husband tried to start a family that the more severe symptoms of the chronic autoimmune disease surfaced.

Over several years, Ward miscarried 3 times. Her fourth baby, initially deemed healthy, was tragically lost to spontaneous placental eruption.

In hindsight, the persistent hip and elbow pain and occasional dizziness that she initially wrote off as signs of aging were actually symptoms of lupus attacking her joints.

“I always felt like I needed to be oiled in the morning,” Ward said. “But my doctor later said that shouldn’t be happening until at least my 50s.”

After a positive anticoagulant marker result indicated lupus anticoagulant syndrome, she was told that her “thick blood” was responsible for not supporting her pregnancies.

It was only after consulting a fertility specialist, rheumatologist, hematologist and her primary care doctor that she finally received an explanation.

“Lupus takes a while to diagnose,” said Akilah Hill, health education associate at the DMV Lupus Foundation. “Each case is a snowflake.”

For one patient, lupus may look like arthritis, while for another it may seem like a prolonged flu.

While no doctor or specialist truly understands what causes lupus, or any autoimmune disease for that matter, there is a chance for remission.

Benlysta, an immunosuppressant and steroid, is the first drug in 50 years developed to specifically treat lupus.

However, many patients, including Ward, are unsatisfied with the idea of relying on medication for their entire lives, especially considering the harsh side effects of frequently prescribed immunosuppressants and chemotherapy.

After just two weeks of drugs and gastrointestinal side effects, Ward reached out to other patients through the Lupus Foundation Facebook page who were also curious about alternative methods for remission. Encouraged, she quickly began a plant based diet and exercise routine — a major departure from her usual consumption of soda, sweet tea and soul food.

“It hasn’t been easy,” Ward said. “I cut everything out from the start — nothing processed, nothing sugar, nothing white carb-based. I stayed on the edges of the supermarket.”

The first two weeks went by slowly. Overwhelmed by what she calls withdrawals, she craved more food just an hour after eating a full, nutritious meal. But after a while, Ward started to see food in a new light.

“Food really can be medicine,” she said.

In addition to her new organic, farm-raised diet, she went gluten-free. Her energy picked up, her hip pain reduced to soreness, and her digestive issues disappeared altogether.

“The organic, real food is smaller and goes bad fast, but I realized this is what I should be eating,” she said.

A new but promising line of field research based on the gut microbiome seemingly affirmed her results. The gut, which makes up over 70 percent of the immune system, holds abundant potential for “natural” and accessible treatment for all types of ailments using a simple resource: food.

“When I changed my diet, I started taking probiotics, drinking more water, and I started to crave fresher things,” she said.

The intestines are the gateway to the immune system, so her gut instinct was right: food really can be medicine.

Her doctor confirmed her success as well.

“My doctor last told me, ‘I don’t know what you’re doing but keep doing it. Your ANA antibodies are not where we want them yet, but they’re coming down,'” she said.

Ward’s has been a journey from loss to restoration and growth. Her new routine has had a positive effect throughout her life, from influencing healthier habits in her family members to successfully convincing her boss to convert a closet to a popular meditation room to decrease stress and increase productivity.

Stress is a major trigger for lupus flareups. Although she lives life on a deadline from her line of work in publication, she feels calmer and more energetic than ever before.

“A little of this is a blessing in disguise,” Ward said. “I still grieve the loss of my babies, but I would have never gone to the fertility specialist before them. Now, the next baby will be a lot better and healthier because of it.”

May 10 is World Lupus Day, during which participants wear purple to raise awareness about the illness affecting one in 537 African-American women. The 2017 DC Walk to End Lupus Now will take place Saturday, May 20 in the District at the Lincoln Memorial. Register at http://www.lupus.org/dmv/events/entry/2017-dc-walk-to-end-lupus-now.

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