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A body under attack

Shawnette Guerrier is one of millions fighting lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body
  • Shawnette Guerrier, 45, who was diagnosed with lupus 13 years ago, said some days she’s on top of the world and can do anything, including cleaning her house from top to bottom, but she says the next day she could be down to zero and not want to be bothered. She is one of millions of people living and suffering with the disease. Photo: SHAWNETTE GUERRIER

SHAVAUGHN MOSS
Guardian Lifestyles Editor
shavaughn@nasguard.com

Published: May 09, 2017

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Imagine some days waking up and your entire body aches — you’re fatigued to the point that you’re completely drained. Then there are days you wake up and have problems with your vision; another day your hands or feet could be purple (caused by bleeding); or you have ulcers on your tongue that don’t allow you to eat — sometimes for days at a time. Welcome to Shawnette Guerrier’s world, and that of anyone who has been diagnosed with lupus.

“Some days you can be on top of the world and want to do anything, including clean the whole house, and the next day you go down to like a zero, and sometimes you just don’t want to be bothered,” said Guerrier, 45, diagnosed with lupus 13 years ago.

Experiencing what she thought were flu-like symptoms in 2004, Guerrier went to get checked out at a clinic and was told to go the Princess Margaret Hospital where she had surgery to remove fluid buildup around her heart and lungs. She was hospitalized for approximately four months, as she underwent a battery of tests to determine what was wrong with her. She was eventually diagnosed with lupus. It was a word that was completely foreign to her at the time. She had never heard of it and didn’t even know that it was a disease.

In lupus something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders” like the flu). Normally, a person’s immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between the foreign invaders and the body’s healthy tissues, and creates antibodies that attack and destroy healthy tissue. The autoantibodies cause inflammation, pain and damage in various parts of the body.

Guerrier is one of millions of people worldwide struggling with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys and brain.

“First I had to admit that I was dealing with something that I didn’t know about,” she recalled. “When I was discharged they gave me a lot of information to read up on it.”

Guerrier is the first person to be diagnosed with lupus in her family.

In today’s technological world she Googles everything — even if she gets a rash on her hand. And she makes the most of the Lupus 242 support group. She takes in all sessions when medical personnel are present to speak to them, and she speaks to other lupus diagnosed persons to see how they cope with flare-ups from the disease.

Guerrier joined Lupus 242 after a chance meeting with deceased Lupus 242 president, Shanelle Brennen, who visited Lickety Split Ice Cream Parlor where Guerrier worked. Through their conversation they found out that they both had lupus. Brennen invited her to a Lupus 242 meeting.

While some groups of people develop lupus more frequently than others, lupus develops in people of all ages, races, ethnicities and genders.

Lupus is a hard to diagnose disease, which mimics other diseases. It can be debilitating when a sufferer experiences a flare.

“A lot of times people look at you and say you look normal and like everything is okay, but deep down inside we go through a lot, and people don’t know that. They think you’re lazy, like you don’t want to pull your weight, but it’s not that. It’s just that some days you can be on top of the world and want to do anything, including clean the whole house, and the next day you go down to like a zero and sometimes you don’t want to be bothered, because it has you in a depressed state too,” she said.

Guerrier said a positive mind gets her through flares. She said she prays a lot to try to remain calm, as one way to reduce the onset of flares is a calm, stress-free life.

“I tell myself I can do all things through Christ who strengthens me, and being around positive people like the lupus group and my family and grandchildren.”

Two years ago she had a particularly bad flare-up, as the stress of her son being killed took its toll on her.

“I didn’t eat for days. My body was painful … feet hurt, bones hurt … everything was hurting on me. I had headaches … and everything was purple. They say people with lupus aren’t supposed to endure stress. That we’re supposed to be carefree — nothing to worry about, because when you start to put pressure on your body the lupus flares up. His death was stressful.”

Her daughter, Michela Sampson-Gayle, who is in her late 20s, was tested for the disease six months ago after she had her baby and complained of increased fatigue; the result was negative, which was a relief to Guerrier.

As Lupus Awareness Month is observed during May, and World Lupus Day is recognized tomorrow, to increase public understanding of this cruel and mysterious disease that ravages different parts of the body, Guerrier encourages people to be health conscious and to get tested if they are suffering but don’t know why.

“In that time in my life I didn’t know what was going on. I was a person who always walked and jogged, and at that time I thought I was healthy, until I went to hospital with flu-like symptoms and they diagnosed me with lupus. Make sure you get checked up, because a lot of times we think we look healthy, but we’re not.”

More than a decade after being diagnosed, Guerrier said she is able to work for months and feel upbeat before the disease takes its toll and she becomes tired and fatigued. She said her boss and co-workers are understanding of what she goes through, and even recognize the signs when she’s suffering through a flare.

“They tell me when I look good and when they see me limping, or my eyes getting red, they tell me I’m having a flare.”

 

Formation of support group

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, Brennen had a rough bout with the disease that put her out of work for almost six months. During that time, she 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.

LUPUS 242 EVENTS (including P.O.P. — Put on Purple Fridays in support of lupus fighters)

Wednesday, May 10 (World Lupus Day): Commemorated globally, and serves to draw attention to the impact that lupus has on people worldwide. The annual observance focuses on the need for improved patient healthcare services, increased research into the causes of and cure for lupus, earlier diagnosis and treatment of lupus, and better epidemiological data on lupus globally. World Lupus Day serves to rally lupus organizations and people affected by the disease around the world to embrace the common purpose of bringing greater attention and resources to efforts to end the suffering caused by the disabling and potentially fatal autoimmune disease. This year the date falls on the day of The Bahamas’ general election. Lupus 242 members encourage Bahamians — especially persons who would like to dress in neutral colors while voting at the polls — to put on purple, vote, take photos, post them online using the hashtag#PopAtThePolls and tag their group.

Friday, May 12: Lupus 242 and Big Picture Paint & Sip Studio will host a POP, Paint & Sip fundraising event.

Saturday, May 20: Hope Floats annual balloon release ceremony at the top of Fort Charlotte, to remember those persons who have died from lupus. This year’s balloon release will be held in honor of deceased Lupus 242 president Shanelle Brennen.

Saturday, May 27: Health talk with rheumatologist Dr. K. Neil Parker at the Harry C. Moore Library at the University of The Bahamas.

To support the cause, persons can attend events and purchase Lupus 242 t-shirts, wristbands or car bumper stickers. Proceeds go towards local awareness initiatives and global research. For more information on the group and upcoming events, visit www.facebook.com/lupus242, email lupus242@outlook.com or call 242-525 9967.

 


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