The disease that attacks without warning
Despite having Lupus, 18-year-old Joel Cox is able to enjoy his life and do things such as play with pet rabbit (Adrian Narine photo)
Despite having Lupus, 18-year-old Joel Cox is able to enjoy his life and do things such as play with pet rabbit (Adrian Narine photo)

– GPHC records more cases of lupus than expected

WAKING up every morning not knowing whether she will have joint pains, headache or other debilitating pains, was 28-year-old Tiffiney Bel’s fate after she was diagnosed with Systemic Lupus Erythematosus (SLE), commonly known as lupus.
“The disease affects different parts of your body and you don’t know what it is going to attack next,” said Bel, as she opened up about her battle with Lupus during a recent interview with Guyana Chronicle.

The mother of two was living a normal, healthy life until one year ago when she was diagnosed with lupus.

According to the Lupus Foundation of America, Lupus is a chronic autoimmune disease that can damage any part of the body including the skin, joints, and/or organs.
The foundation stated that 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).

GPHC Senior Registrar, Dr. Grace White

“At first, I was shocked because I never heard of it (the disease) before… I had no clue what it was, so I did not know what to expect, but after getting the diagnosis I wanted confirmation so I left and went to the States for further testing and when they told me about it, I was scared, I thought it would have been the end,” said Bel.

The disease started attacking her Kidneys and the local doctors wanted to place Bel on dialysis because their assumption was that she had a kidney infection, but that was not the case. After realising that she was getting nowhere locally, the young mother travelled to the US where she was immediately placed on medication.

“It started to help me and eventually I was ready to get back to my life… since then I have had to take my medication and I attend clinic here (in Guyana) once a month,” said the young mother.

Today, because of her treatment, Bel said the disease is not life-threatening to her, but she would often wake up with joint pains and other debilitating symptoms. Despite the aches and pains, the young mother is able to get up and get through her day and even spend quality time with her two daughters, who endured a lot when their mother was first diagnosed with the disease.

Just as she has been able to make it through so far, Bel advised persons to take their medication, eat healthy and be positive. She encouraged others living with the lupus to not let the disease control them, but to be proactive and happy.
“Don’t be scared of it, I would say that to anybody and tell them don’t let the disease control you… I have been enjoying my life, socialising and making my days happy,” said the young mother.

Bel’s enthusiasm and positivity are things which doctors encourage lupus patients to portray and Senior Registrar at the Georgetown Public Hospital Corporation (GPHC), Dr. Grace White confirmed that they would encourage persons to adopt healthy lifestyles, eat right, exercise and have a good social and spiritual life.
Dr. White, who is in charge of GPHC’s medical clinic, said she would encourage her patients to stay strong and stick to their medication.

The hospital had started a specialised clinic for rheumatologic diseases of which lupus takes up the majority of the cases.

MORE THAN EXPECTED
“Right now in the clinic we have about 25 patients enrolled, but of that 25, there are 18-20 lupus patients or patients with a combination of lupus and other diseases… we have not ignored the seriousness of lupus and that is seen in the fact that we have been seeing more cases than we would have expected,” said Dr. White.
The seriousness of the disease, which affects celebrities like Selena Gomez and Nick Cannon, has not escaped GPHC. And according to Dr. White, they have many medications that are commonly used to manage the disease. The disease, she said is considered non-curable, but the medication can be used to manage the disease.

Joel Cox shares a moment with his father, Tracy Cox and mother Alicia Cox (Adrian Narine photo)

In addition to traditional medication, doctors in medicine have been turning their attention to non-pharmacological means of helping patients to manage lupus. Dr. White said other means such as counselling and coaching on lifestyle methods are used to deal with patients who suffer from lupus.

“Those things may help them to lead a healthier life… so with a patient who has been diagnosed with lupus, the first thing we need to let them know is that it is not the end of the world,” said the doctor.

The severity of the disease varies from person to person and it has been proven that persons are sometimes able to carry on very “close to normal” lives with the disease.
“For those with very severe symptoms that are resistant to many medications, the doctors try our best to limit the severity of the manifestations so patients can expect compassionate and diligent care from us at GPHC… rarely we find cases with persons who show severe symptoms,” said Dr. White.

In the case of lupus, some of the symptoms can be severe because the antibodies are directed against many different kinds of tissues, especially connective tissues and serious membranes. And, according to Dr. White patients may have inflammation of the lining of the lungs, inflammation of the lining of the heart, arthritis and it may even result in brain disease, heart disease, lung disease and so forth.

Although GPHC has been doing its best to deal with the disease and treat patients with the care they deserve, a lot has not been done to keep track of the prevalence of the disease.
Dr. White said there is not a lot of prevalence data, but worldwide data shows that lupus predominantly affects women, but there have been rare cases of men contracting the disease. The Lupus Foundation of America said the disease tends to affect women more than men.

One of the rare cases was that of 18-year-old Joel Cox, who was diagnosed with lupus three years ago. Cox was what people would consider a “cool customer”, since he did not react negatively after being diagnosed with the disease.

“I just acted normal when I hear about it… but some of the things I love doing like taking care of my animals, catching fish and just hanging out outside, I cannot do as much anymore because I cannot really be in the sun,” said young Cox.
Like Bel, some of his days would be nice and on other days he would experience joint pains, get an outbreak of rashes and even feel weak.

I THOUGHT I WOULD LOSE HIM

Tiffiney Bel

Although Cox was as cool as a cucumber after being diagnosed with lupus, his father Tracy Cox was worried that he would lose his son, especially in the early days after Joel was diagnosed with the disease.
“Back when he de first get diagnosed with it, he de experiencing severe symptoms and once I even looked at my son and said I gotta prepare for this, I gotta prepare for death,” said Tracy.
The mechanic said his son needed lots of support and attention in order to get back on his feet because, to which he received in abundance. This, he said, enabled his son to be much better today.
“My advice to anybody with the sick is to stick to what the doctor is telling you and ensure you stay close to those persons who care about you… stay strong and don’t give up,” said Tracy.
Even the Lupus Foundation of America believes that for persons living with the disease, being their own advocates or having someone, who can advocate for them, would help persons take charge of their physical and emotion health.

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