Living With Lupus: Learning to Live With Limitations

Lupus Foundation of Grenada logo from their FB page

by Donella Hosten

May is recognised internationally as Lupus Awareness Month, and Grenada has joined in to do its part.

To raise much-needed awareness about lupus, the Grenada Lupus Foundation embarked on an initiative dubbed ‘Put on Purple,’ on Friday, 19 May 2017 where several persons wore something purple and shared at least 1 fact about lupus with someone else.

Senior Medical Officer at the Ministry of Health, Dr Francis Martin, shared the cause of lupus, how it is diagnosed and how it can be treated. Although he was unable to provide exact figures of persons in Grenada living with lupus, Dr Martin said there are quite a few cases presently.

Lupus is an autoimmune disease, according to Dr Martin, “caused by a chronic inflammatory process in the body.” He went on to say that it is not easy to spot lupus, as “signs and symptoms can be quite insidious.” Signs include the butterfly rash on the face, joint pains, photosensitivity, headaches and feeling generally unwell.

With photosensitivity, persons living with lupus are unable to tolerate the sunlight. Lupus also affects the blood vessels, the brain, the stomach and other organs.

To date, there is unfortunately, no cure for lupus. Steroid treatment is available, but this can cause other complications, including diabetes.

Dr Martin also stated that persons could be genetically predisposed to Lupus, and suggested that in situations like these, they should try to eat foods that boost their immune system, “bright coloured foods [such as] pumpkin, bananas, oranges [and] papaya.”

Although lupus is a disease that is not going to go away, there are some things persons living with it can do to live a somewhat normal life. Dr Martin suggested that their support system plays a very important role when it comes to coping with the illness, as does avoiding exertion and stressful situations, having proper diet and exercise, as well as living and working in conducive environments.

Notably, there are 3 main types of Lupus; Systemic Lupus Erythematosus (SLE), Discoid Lupus and Drug-induced Lupus. SLE is the most common and affects more women (of childbearing age) than men. It can be either mild or severe and affects the kidneys, nervous system, brain and blood vessels.

Vice President of Lupus Foundation of Grenada, Lisa Duncan, spoke in an exclusive interview with the NOW Grenada team about her experience with lupus.

Duncan was diagnosed 21 years ago. She said her symptoms started while she was still in secondary school, and it took nearly 5 years to get diagnosed.

When asked about her initial response to the diagnosis, she indicated that she was “relieved, because I actually knew what I had.” She displayed symptoms, but no one could tell her what was going on with her body. “At one point, I felt as though I was crazy and maybe I was just overthinking everything that was going on.”

Duncan said she felt a sense of relief, then began researching lupus and was sure she had terrified herself. But because of the overwhelming support of her family and friends, she was able to cope with and learn to manage the disease.

“It’s something that I’ve learned to live with, something that I co-exist with, so even though it’s there, I certainly don’t let it define who I am.” She went on to commend her friends and family for their assistance, especially in trying to plan activities around her health, as she is unable to be out in the sun for extended periods.

Another young woman who is currently living with SLE is 20-year-old Eamonie Wells. She was diagnosed 5 years ago and is currently undergoing dialysis. “It is very difficult to live in a body that is attacking itself from the inside out.” She said lupus invaded her life and affected her socially, physically, psychologically and financially. However, it has sculpted her into a more understanding and compassionate individual, making her more aware and empathetic and appreciative of the everyday leisure of life, “like simply getting out of bed, getting dressed or preparing a meal.”

Eamonie believes that “chronic illnesses like lupus can undeniably incapacitate one’s ability to have an actively social life,” however, she has learned to pick up herself, and now has an extra drive to live life to the fullest. Despite all her trials and limitations with lupus, she remains strong in her faith.

She knows and understands that some of her dreams had to be put on the back-burner or cancelled altogether because living with lupus can mean “living with limitations.” However, she wants people to know that it is not a death sentence. “No matter how hard it may seem, giving up should never be an option.”

Young Eamonie wishes that employers can see persons like her for who they are instead of using their illness against them. She said not being able to have a regular lifestyle or have a job can impact psychologically.

In Grenada, the main support group for persons living with lupus and other chronic illnesses is the Lupus Foundation of Grenada, officially launched in 2008. The Foundation operates as an umbrella and offers support and education to its members, currently 25 persons ranging from age 18-70 years.

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