Living Your Best Life with Lupus
By Samantha Leader | Photography by Mary Grace Johnson
A t least 1.5 million Americans have lupus, a chronic autoimmune disease that can affect many parts of the body, from skin to joints to organs. Since the disease’s symptoms mirror those of many other diseases, it can be difficult to diagnose and treat. According to the Lupus Foundation of America, on average, it takes nearly six years for an individual to be diagnosed.
Deana Fellows, a member of the Lupus Alliance of Upstate New York, received the news of diagnosis when she was 22 years old.
“The process of getting diagnosed started when I was 20 years old, with a newborn baby,” Deana said. “At that time, I was faced with choices and decisions that no one should ever have to make.”
She began to notice symptoms of lupus in 1989, shortly after a stressful labor during her first son’s birth. Her joints were inflamed and in pain. It stopped her from being able to brush her own teeth or hair, let alone take care of her newborn baby, she remembered.
Deana believes her lupus was triggered by the pregnancy. Her body was under distress for 46 hours with no medication.
“My primary doctor at the time ran some tests and kept dosing me with steroids,” she said. “He had no idea what he was looking for, and it just got worse when I got pregnant for the second time in 1991.”
It wasn’t until five months into her pregnancy that Deana was tested for lupus. She was in the emergency room with an acute pericardial effusion when her mother asked the doctors if they’d tested her for lupus yet. After Deana tested positive for lupus, she was terrified. Not many people were knowledgeable of the disease at the time, she remembered.
Though doctors told her family Deana was terminal, Deana’s mother had her transferred to Columbia Presbyterian Hospital in New York City.
“My family and Dr. Israeli Jaffe are the reason I am here right now,” Deana said. “He and his associates stayed by my side and researched day and night, until they figured out how to save me.”
On the more difficult days, Deana was lucky to have encouragement from her family and friends. They’re still there for her today.
“Many people are not fortunate enough to have as much support as I did,” she said.
After living with lupus for 18 years and never knowing another person who suffered from the same disease, Deana heard about the Lupus Walk at Destiny USA, an annual event organized by the Lupus Alliance of Upstate New York. At the walk, she met other women who’d been affected by lupus. Finally, she had people she could relate to.
Deana vowed she would do whatever it took to keep other people from going through the same experiences she had with lupus.
She didn’t want anyone to be told there was no help for them, she explained. She offers people she meets at walks and meetings a place to stay in New York City when they visit the doctors, lends an ear when they need to talk and passes along the knowledge she’d gleaned throughout the years.
“In the Lupus Alliance support group meetings, I met a close friend who reminded me of myself,” Deana said, describing her friend as “a spitfire who was going to fight and not let this monster of a disease stop us from being who we are.”
The women attended a candlelight vigil together in May 2015 to honor all those living with lupus, as well as those who had passed away. At the time, Deana didn’t know she would stand with her friend that year, and stand for her the following year.
“I made a vow to myself and to her that I would be the best voice I could be for the lupus community, like she was until she no longer could be,” Deana said.
Her advice to others diagnosed with lupus is to be your own advocate and educator. Keep a journal and write everything down, she suggested.
“People say, ‘Live life like it’s your last day.’ I try to do that, because with lupus you literally do not know,” Deana said. “Live your best life
and have no regrets.” SWM
May is Lupus Awareness Month. For more about the Lupus Alliance of Upstate New York, visit lupusupstateny.org.