Lupus Diagnosis Leads to Passion and Purpose

Laura Mitchell's picture
By Laura Mitchell on February 27, 2017

When she first began experiencing symptoms of lupus, Alyshia Merchant thought she was just overdoing things. She was working full time, going to school and—like many young adults—dreaming of leaving Roanoke to experience the world.
 
“I had no previous health issues,” she said. “However, as time passed, I became more and more fatigued. One day I was so tired driving home from the store that I had to pull over to sleep.”
 
Within a month, she developed a butterfly rash on her face and visible swelling in her feet. Her body temperature reached 105 degrees. A trip to the emergency room led to a biopsy, which tested positive for lupus nephritis, a kind of lupus that attacks the kidney.

Diagnosing Lupus
Merchant’s experience is unusual in that her lupus was diagnosed so quickly. A chronic, inflammatory autoimmune disease, lupus is sometimes called “the great imitator” because its symptoms are similar to those of other autoimmune disorders, diabetes, thyroid problems, depression, various heart, lung, muscle and bone diseases and even the flu. As a result, patients can sometimes go months or even years without a proper diagnosis.
 
At least 1.5 million Americans have lupus. Most patients are women of childbearing age, and women of color are three times more likely to develop lupus than white women. According to the Lupus Foundation of America (LFA), the most common symptoms of lupus are:

  • Extreme fatigue
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia
  • Swelling (edema) in feet, legs, hands and/or around eyes
  • Pain in chest on deep breathing (pleurisy)
  • Butterfly-shaped rash across cheeks and nose
  • Sun or light sensitivity
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • Mouth or nose ulcers

Over time, lupus can result in a wide range of complications that include:

  • Kidney failure
  • Memory problems
  • Behavior changes or hallucinations
  • Seizures
  • Stroke
  • Heart disease or heart attack
  • Cancer
  • Avascular necrosis

Making Lupus Look Good
Initially confused and dejected by her diagnosis, Merchant quickly turned it into a new passion: developing and leading Making Lupus Look Good, an organization dedicated to making lupus patients regain their confidence and build a community of support.

“This illness has changed my life, and bringing awareness to it has become my passion and purpose,” she said. “So many people out there feel that they are fighting this battle alone, but they aren't!”

Some of the challenges associated with lupus include hair loss, disfigured skin and weight gain from medications, which is exacerbated by the chronic exhaustion that makes working out difficult.

Making Lupus Look Good provides custom wigs, skin care consultations, makeovers and professional photography shoots, all intended to build the self-esteem of women living with lupus. It also provides a community of support for people suffering from an often-invisible illness.

Rheumatology patient and her daughter in field.
Alyshia Merchant: mother, Carilion Clinic rheumatology patient and founder of Making Lupus Look Good.

“When you don’t look sick, people tend to lack compassion,” said Merchant. “It can be frustrating because you look fine from the outside but on the inside your body is turning against you.  People don’t understand the illness. They think you’re fine."
 
Lupus Treatment
There is no cure for lupus. A lifelong chronic illness, it can go into remission and then flare up again unexpectedly, so treating it requires ongoing changes to medications. Merchant receives the majority of her care from Carilion Clinic’s chief of Rheumatology, Adegbenga Bankole, M.D. She credits him with both clinical successes and with advocating for her and building her confidence throughout her treatment.
 
“I believe that one of the keys to quality care is having a good relationship with your doctor,” she said. “What I like most about Dr. Bankole is the way he communicates. Whenever he has to explain something to me, he breaks down the pros and cons involving a medication, procedure, or situation, and he is able to relate to you on your level. He has the ability to step down from being my doctor, to being my teacher. To me, this is vitally important.”
 
Recommended treatments for lupus symptoms include steroids and chemotherapy, both of which have significant side effects. LFA describes the goals of treatment as:

  • Reducing inflammation
  • Suppressing the overactive immune system
  • Controlling joint pain and fatigue
  • Minimizing damage to organs

In Merchant’s case, acute kidney failure in 2014 led Dr. Bankole to conclude that chemotherapy (Cytoxan) was needed to suppress her immune system and allow her other medications to be more effective.

“I was only 25 years old at the time and I only have one child, so Dr. Bankole was very concerned that chemo could result in infertility issues. He persistently advocated with the insurance company to approve a prescription to preserve my ovaries.”

Another aspect of lupus treatment that has been important to Merchant is stress management, especially related to the costs of health care.

“Health care can be very expensive when you have a chronic illness,” she said. “You're constantly in and out of doctors’ appointments, emergency rooms and sometimes even admitted in the hospital. Carilion has an amazing qualifying Charity Care program, which helps assist with medical bills. Many autoimmune diseases are triggered by stress. Being able to partake in this program, when it was necessary, took a huge load off of my shoulders, so that I could focus on my treatment.”

Future Plans
After five years of living with lupus, Alyshia Merchant has learned a few lessons. First and foremost among them is the willingness to accept her diagnosis and work within its realities.

“I dreamed of moving out of Roanoke, but I have learned the importance of family, friends and having a strong support system,” she said. “With the unpredictability of a flare up, and my daughter being so young, I've had to push the idea of moving to another city to the side, because of the importance of having my support system near.”

Another dream she had was to become a professional model. While her illness makes that impossible, she has created in Making Lupus Look Good an opportunity to make all women with lupus feel like models.

The life she knew as a carefree young adult with energy to spare is over, but in its place is a newfound passion to help others. She credits the care she receives at Carilion Clinic with enabling her to focus on her treatment with the full support of the Rheumatology team.

“The support staff and nurses with the Carilion Rheumatology Department make me feel as if I am a part of a family,” she said. “Any time that I need to call about something, they never make me feel insignificant, or as if I'm worrisome. They are very attentive.”

Advice for Others
Merchant offers the following advice to people who don’t suffer from or understand lupus: Be empathetic.
 
“I feel that one of the biggest reasons that people with invisible illnesses suffer silently is because they have a fear of rejection and judgment,” she said. “With lupus and many other invisible illnesses, the body attacks from within. So by the time people are able to see physical problems, in some cases it can almost be too late. Think twice before you say that someone doesn't look sick, because they may be sicker than you could ever imagine.”

“My life has never been the same since my diagnosis,” she added. “But while lupus may slow me down, it will not stop me. My lupus is not in full remission, but my life is more manageable under Dr. Bankole’s care.”