The POWER in PURPLE
There are days Thalia Sawyer-Roberts has been in so much pain that she can’t even do up the buttons on her shirt herself, but the teacher of K4-aged students at Coconut Grove Preschool knows that she has young, impressionable children waiting for her each day so she “sucks it up” and does her best to not let the children see her suffering.
“I don’t want to bring that energy around them, so I’m mindful that I can’t stay down too long. Sometimes I get depressed … when you’re home in your room you think about the disease you get down sometimes, and I pick myself up, wipe my tears away and I get back up. I know that they’re depending on me, so just being around them, they’re giving me the energy and the push to keep going. I would say I’ve learned to be strong, and try to stay as positive as I can.”
Sawyer-Roberts, 31, was diagnosed with lupus in 2014.
But her suffering didn’t just start four years ago. It was 11 years ago, at age 20 that she started experiencing pain in her knees and wrists that was so debilitating that she had to stop exercising. She was tested for and diagnosed with rheumatoid arthritis. After the diagnosis the pain progressed to her toes and other joints.
It wasn’t until she started losing her hair that she thought something else could be wrong. She was given a full lab workup, at which time it was determined Sawyer-Roberts had an overlap of lupus. She was diagnosed at age 27, at which time she said the pain from the flares was constant and daily.
It was a disease she had never heard of and had no knowledge of, prior to her diagnosis.
Lupus is a chronic autoimmune disease that can damage any part of the body — skin, joints, and/or organs. In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs.
The disease can range from mild to life-threatening. Lupus strikes mostly women of childbearing age. However, men, children and teenagers develop lupus too. Most people with lupus develop the disease between the ages of 15-44. Women of color are two to three times more likely to develop lupus than Caucasians. People of all races and ethnic groups can
develop lupus. With good medical care, most people with lupus can lead a full life.
Sawyer-Roberts’ flares are skin-related. She said it really got bad for her during her vacation last year, during a cruise during which she was exposed to too much sun.
“It really got bad when I came back from vacation last summer. That’s when I started getting all the scarring on my arms, my chest, my face, and I have scarring on my scalp. I went on a cruise, and because I was in the sun so much that caused me to flare really badly. When the scarring started to come on my jawline I was like what am I going to do? Thank goodness for makeup, I can put the makeup on it. But the scalp with my hair, most of my hair fell out because of it, so I’m now using wigs, scarves and head wraps.”
During her initial diagnosis, she said she had a “rough” time especially after both her parents, Theresa-Rose Balfour, and her father Robert Sawyer said they did not have any family afflicted with lupus prior to her.
Her mom she said sees her dealing with her flares more than anyone else, and as she does not have lupus, Sawyer-Roberts said her mother could only try and empathize.
“She really doesn’t know what I’m going through,” said the teacher. “There were times when I couldn’t even button a shirt.”
Doing research on the disease, she came across local support group Lupus 242 on Facebook, and came across a talk by rheumatologist Dr. K. Neil Parker on [email protected]
Sawyer-Roberts joined Lupus 242 last year. She believes it was probably one of the best things that happened to her.
“It means so much to me, because at my first meeting I was going through some challenges, and going to that meeting I saw one of the persons who had lupus in a wheelchair. Just watching how that young woman came into that meeting — she brought such a ray of sunshine — she did not let that cripple her. Even though she was in a wheelchair she just brought so much laughter and so much happiness to that meeting, I was motivated by her.
Lupus 242 was originally the idea of Debbie Humes who got very sick and was unable to pursue the idea of putting the group together. In 2011-2012, deceased Lupus 242 president Shanelle Brennen experienced a rough bout with the disease that put her out of work for almost six months. She then decided to get the group up and running. They launched in April 2012 with Brennen as president and her younger sister Shonalee King Johnson, who does not have the disease, as her vice president and public relations coordinator.
Brennen wanted to start the support group so that fellow sufferers did not feel alone, and to let them know they had support. She felt that a lot of people suffered in silence and came up with the theme, ‘Breaking the Silence, Supporting the Cure’, which is their motto. The group has regular meetings and provides education. She wanted it to be such that someone who was on the other side of a lupus experience could speak to it.
During Lupus Awareness Month, which is recognized during May, Sawyer-Roberts said she would like to see people make themselves more knowledgeable about the disease.
“You can’t really tell that we’re sick, so just be sensitive to us. The fight is on the inside, only sometimes it manifests itself on the skin, and that’s how you may tell this person has something wrong with them,” said Sawyer-Roberts who also developed the telling rash in the shape of a butterfly.
The worst thing she said someone said to her happened during the time she was in hospital.
“Someone said to me, you don’t look sick,” she recalled.
With education uppermost in her mind, she speaks to her students about her illness and explains to them what lupus is, especially as they sometimes miss her when she has to be out
“I talk to my students about it and try to explain what lupus is,” she said.
The longest she’s been out of work has been for a week at a time. She was out for a week during December 2017 and then again most recently three weeks ago.
“I haven’t had it so severe that I can’t work. For the most part I come to work. Even if I have pain I would try to push through,” she said.
Sawyer-Roberts said she is one of those persons hoping for a cure.
“We can only treat the symptoms to help us live a better life, but persons living with lupus are strong and we have to be, so just continue to encourage us.”
She also wants to continue teaching and be able to pursue her hobbies, one of which is art. She creates characters for the classroom. Makeup application is another one of her hobbies.
LUPUS 242 CALENDAR OF EVENTS
Friday, May 24: POP For Lupus. Each Friday, put on purple for Lupus Awareness. T-shirts are on sale
Saturday, May 26: Health talk with rheumatologist Dr. K. Neil Parker at the University of The Bahamas at 12 noon; health screenings will be done
To support the cause, and for more information about the group, persons can contact 525 9967, www.facebook.com/lupus242, [email protected]