Joenel Humes is like most teenagers -- she's looking forward to summer break and doing absolutely nothing, especially after sitting six Bahamas Junior Certificate examinations (BJCs). She also likes to sing and dance, and talking with her friends is high on her list of priorities.
She, too, has lupus.
The 14-year-old, who is affectionately referred to as "JoJo" by her family, was diagnosed with the chronic inflammatory disease in March 2013. In typical teenage fashion, she has not told any of her friends of her disease.
"She doesn't want to talk about it," said her mother, Sherea Newbold. "When you talk to her about it she goes quiet. She doesn't say anything."
Newbold believes her daughter is scared, which is why she doesn't talk about the disease. She also chalks up the lack of engagement on the subject matter to the fact that her daughter is a teenager and needs more time to adjust to the diagnosis.
Lupus occurs when the body's immune system attacks its own tissues and organs. It can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus is the facial rash that resembles the wings of a butterfly unfolding across both cheeks. Some people are born with a tendency toward developing lupus, which could be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms. And no two cases are exactly alike.
"I understand that I have lupus," said Humes, who believes the illness is a personal matter.
In December 2012, Humes began experiencing swelling in her legs combined with soaring blood pressure readings. She was hospitalized for almost a month and a half. She was initially diagnosed with nephritic syndrome, the name given to a cluster of symptoms and signs; nephritic syndrome can be caused by a number of underlying pathologies affecting the kidneys, but is not in itself a diagnosis.
Eventually, she tested positive for lupus. Her mother took her to the United States to have a kidney biopsy done, at which point she again tested positive. She was in hospital at that point for an additional 10 weeks, and had to be admitted into the intensive care unit after suffering two seizures because of high blood pressure.
Newbold says Joenel's doctors have told her that she needs to be careful with her daughter as her high blood pressure puts her at risk for strokes. Her daughter's diagnosis called for drastic changes in her salt intake and eating habits, especially when it comes to most teenagers' food of choice -- fast food.
"It's difficult telling a teenager she can't have certain things," said Newbold. " Teenagers are used to fast food, but if she has fast food now, she knows what she can and cannot have, and if she has any fast food at all, it's only so often."
When she indulges in fast food, Humes' choices are limited to a few chicken nuggets or a chicken wrap, without sauce or cheese, to avoid negatively impacting her sodium intake, which is strictly limited. Newbold said while her daughter may not necessarily like her new diet plan, after a year the 14-year-old is getting adjusted to it. "Even when she goes out on her own, she knows she can't have certain things, so she doesn't have it. It's been a year, so she's adjusted to certain things but I know I have to give her more time," said Newbold.
While the mother of two was initially stunned when her daughter was diagnosed with the disease, she was not totally unaware of it. Humes' aunt (her father's sister) had lupus; after her daughter's diagnosis, Newbold had to ensure that she was properly educated about the disease.
A little over a year after Humes' diagnosis, Newbold says God has been good to them; Humes has not had any flare-ups and is doing well. As for the teenager's long-term prognosis, Newbold said the doctors have not had any discussions with them to that end as yet.
"To be honest, God has been so good. We just had blood works in January and the doctors said everything looked normal. Joenel right now is okay," said Newbold. "I'm going to be honest...I see my child as a healthy child. I'm a woman who believes in faith. I tell people [lupus] is what the doctors say she has, that's not what God says she has, so personally I see her living a regular, normal life."
Even though she's stable, Joenel has to take a number of medications, which Newbold obtains from the hospital for free, easing the monetary burden on her pocket. But that is a small reprieve in the scheme of Newbold's finances. Her bill at the hospital in Florida for the 10 weeks her daughter was a patient there is in the region of $1 million dollars. The mother of two (she has a three-year-old son who is healthy) said she pays what she can.
Newbold has come to terms with her daughter's diagnosis, and has joined the Nassau-based support group Lupus 242; she currently attends the meetings by herself, but is trying to get her daughter involved more.
The mother's advice for anyone who knows someone with lupus is to get educated.
The month of May is recognized around the world as Lupus Awareness Month, and Nassau-based support group Lupus 242 is leading the way in the education about the debilitating disease that affects an estimated 5.5 million people globally. There are no real statistics on the number of people in The Bahamas with lupus. Lupus 242 to date has 50 active members.
According to general practitioner, Dr. Patrick Whitfield, who works out of the Oxford Medical Center, the illness occurs more commonly in females than in males, with a ratio of 11 females to one male. The disease affects women in their childbearing years - their 20s and 30s. In the United States, statistics show 52 cases per 100,000 are diagnosed with lupus. With this in mind, the physician says if the Bahamian population follows a similar trend, it is likely that a population of about 400,000 would amount to more than 200 people being diagnosed with the illness.
Without prompt treatment, the doctor believes there is an 80 percent chance that patients could succumb to the illness within 15 years of diagnosis. If lupus is left unmanaged, Whitfield said people run the risk of developing symptoms that affect the kidneys and lead to failure with each new relapse. There is a 50 percent chance that people with lupus will suffer from kidney diseases, which could potentially lead to kidney failure, decreasing their life expectancy. Reports show that about a third of all lupus patients in the U.S. died below the age of 45.
However the doctor said that although lupus can seem depressing and the disease is painful, its mortality rate is relatively low. With regular care and treatment, mortality is greatly reduced; lupus patients have a strong chance at living relatively normal lives, if they are on the right medication and are vigilant about their health.
Complications that can develop from lupus include neuro-psychiatric features like seizures, psychosis with hallucination, delirium and meningitis. Sometimes antibodies can attack the spine, making patients susceptible to developing weakness in their lower bodies, making it difficult to walk. Strokes and a cognitive disorder similar to Alzheimer's can also happen. Untreated patients or those who are lax in their follow-ups, even with a relapse can eventually get lung and heart diseases like pleurisy or pericarditis, respectively; the diseases involve the inflammation of the linings of the organs.
Dr. Whitfield said early treatment can decrease the damage that the disease can cause and allow a person diagnosed with lupus to live a normal life. It is a disease that should be taken seriously.

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