Erica Morris has to be having a really bad day for her to not be in a good mood, so when she learned she was diagnosed with lupus, she refused to allow the diagnosis to depress her. The only thing she hates is having to ensure that she is covered up when she is out in the sun and always having to don a wide-brimmed hat to protect herself.
“Honestly, lupus did not bother me. When I was diagnosed, I said will it kill me? They said it wouldn’t because it’s systemic, so I said OK. I didn’t really pay too much attention to the lupus, even though I have scars for life,” said Morris. “I refuse to allow lupus to depress me or bring me down.”
Morris, 49, was diagnosed with systemic lupus erythematosus (SLE), the most common type of lupus, seven years ago.
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 the 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.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus – a facial rash that resembles the wings of a butterfly unfolding across both cheeks – occurs in many, but not all, cases of lupus.
Other common signs and symptoms include fatigue; fever; joint pain; stiffness and swelling; skin lesions that appear or worsen with sun exposure; fingers and toes that turn white or blue when exposed to cold or during stressful periods; shortness of breath; chest pain; dry eyes; headaches; confusion and memory loss.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for lupus, treatments, medical interventions and lifestyle changes can help to control it.
According to mayoclinic.org, no two cases of lupus are exactly alike. And signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes – called flares – when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
Signs and symptoms of lupus that a person experiences depends on which body systems are affected by the disease.
Morris, who was diagnosed with stage one breast cancer and over the course of the last year has had 16 rounds of chemotherapy, a double mastectomy, and is now awaiting radiation treatment, said the one good thing having cancer has done for her is controlled her lupus flares.
“I did not have any new flares. My rheumatologist was like well, the good thing is that with the chemo treatment, it will control it.”
Morris, who takes an immunosuppressant, said she hasn’t had to take any lupus medication for over a year.
“The chemo controlled the flares, so I didn’t get any lesions. Chemo was a bad thing, but it did some good as well,” she said.
The causes of SLE are unknown but are believed to be linked to environmental, genetic, and hormonal factors.
People with SLE may experience a variety of symptoms that include fatigue, skin rashes, fevers, and pain or swelling in the joints. Other symptoms can include sun sensitivity, oral ulcers, arthritis, lung problems, heart problems, kidney problems, seizures, psychosis, and blood cell and immunological abnormalities.
The seriousness of SLE can range from mild to life-threatening. People with lupus that get proper medical care, preventive care, and education can significantly improve function and quality of life.
During the month of May, people worldwide raise awareness for lupus.
An estimated 5.5 million people globally live with the chronic autoimmune disease brought on by genetics, environment and hormonal imbalances in the body. There are no real statistics on the number of people in The Bahamas with lupus.
Morris recognizes the awareness month by doing things like dying her hair purple, and wearing purple weave. The color purple is said to be a combination of red, which signifies motivation, and blue which signifies calmness.
SLE can have both short and long-term effects on a person’s life. Early diagnosis and effective treatments can help reduce the damaging effects of SLE and improve the chance for a person to have better function and quality of life. Poor access to care, late diagnosis, less effective treatments, and poor adherence to therapeutic regimens may increase the damaging effects of SLE, causing more complications and an increased risk of death.
SLE can affect people of all ages, including children. However, women of childbearing ages – 15 to 44 years – are at greatest risk of developing SLE. Women of all ages are affected far more than men (estimates range from four to 12 women for every one man).
Minority racial and ethnic groups – Blacks/African Americans, Hispanics/Latinos, Asians, and American Indians/Alaska Natives – are affected more than whites/Caucasians.
Ten years ago, Lupus 242 launched, with an immediate goal to raise the profile of lupus as a condition, and establish itself as a support group for people living with the disease in The Bahamas allowing them to connect with other people who are battling similar issues and facing similar health challenges.
From the beginning, Lupus 242’s focus has been on the needs of its members.
Today, Lupus 242 has between 50 to 60 active members.
World Lupus Day is observed during May, which is Lupus Awareness Month, to increase public understanding of this cruel and mysterious disease. Lupus can affect people of all nationalities, races, ethnicities, genders and ages.
Lupus 242 was originally the idea of Debbie Humes, but she got sick and was unable to pursue the idea of putting the group together. In 2011-2012, Shanelle Brennen, Shonalee Johnson’s late sister, who lost her battle with lupus, formalized the group which launched in April 2012 with Brennen as president and Johnson as her vice president and public relations coordinator.
The group was formed with the motto “Breaking the Silence, Supporting the Cure”. It was Brennen’s intent to have regular meetings and to provide education.
Brennen lost her battle with lupus in on March 2, 2017 from the chronic autoimmune disease that can damage any part of the body.
During her life, Brennen had always been focused on growing the awareness surrounding the illness. Johnson refuses to let the disease win the ultimate battle, and continues her sister’s mission to break the silence and support the cure.
Johnson and Brennen’s late mom, Gwendolyn King, had also been diagnosed with lupus. Johnson has not been diagnosed with the disease.