BASSETERRE, St.Kitts (Friday 14th May 2021)- In observance of World Lupus Day under the theme ‘Make Lupus Visible’, a public awareness event was held on Monday 10th May 2021 in an effort to educate the public about the disease said to be affecting people of St.Kitts-Nevis likewise elsewhere in the world.
Seated at the head table at the event, hosted at the Conaree Wesleyan Holiness Church, were event coordinator Delwayne Delaney, Internal Specialist Dr. Terrance Drew and also Nurse Jessica Clavier who was diagnosed with the disease in 2017.
Butterfly-shaped rash, mouth ulcers, other skin rash, kidney disease, achy joints, hair loss and chest pains are some of the symptoms of lupus.
Globally, May is observed as Lupus Awareness Month while May 10 is World Lupus Day.
Delaney informed that the reason for hosting the event was a two-fold one including to honour the memory of his brother Delroy ‘Bummers’ Delaney.
“The reason behind the event why I decided to plan this event was for two main reasons, and more so than the other. Firstly is to bring more awareness to this lupus ailment,” he said.
Delaney added: “I only learnt of lupus when my brother was diagnosed with lupus back in 2018. Before then, I had no clue what was lupus or where it came from and I’m sure others can testify to the same fact. And my brother, generally around his birthday, I tend to do something in remembrance of him and his birthday is on the 14th of May do I decided to why not bring some more awareness to the lupus and also while remembering him.”
Dr. Drew outlined that lupus is a condition that is fairly common in St.Kitts but most people have no knowledge or much knowledge about it.
According to him, it sounds like leprosy and so forth, and so some people can mix it up.
“But it’s really an outer immune disease meaning that the body has an immune system. The immune system is like the army for the body which fights off infection… the outer immune system fights infections and it also kills cancer cells. Every day, we produce millions upon millions if not billions of cancer cells but because of our immune system that gives us defense both from external infections and also from internal especially the development of cancer, and so that immune system regulates that. The thing with lupus is that the immune system instead of attacking infections coming from outside or even instead of attacking the cancer cells, what happens with lupus is that the immune system which is the body’s army starts to attack what it is supposed to defend.”
According to him, the disease can be mild for some people and it can be very severe but it is more severe in men. Men get lupus less than women but when men get it, they get it worse than women and so men normally develop this aggressive type of lupus.”
Dr. Drew said that it is very difficult to prevent it whilst noting “We don’t even know what causes lupus.”
“We just don’t know. We suspect that it might be the hormonal system of women as they go through their menstrual cycles and the changes that the hormones go through that that might somehow contribute. It might be some infection that you pick up that you don’t know what type of infection it is. It could be that your own immune system is already deregulated and starts to attack the body. It might be genetic, it might be because of the environment that you live in, the type of food that you eat. We just don’t fully understand what causes Lupus and so to prevent Lupus, we just don’t know how to prevent it but we say in general that just like any other disease, live as health as possible- eat well, exercise and take care of themselves but there are many people who do that and still end up with Lupus,” he explained.
He then gave an example that ‘Bummers’ “was fit for almost all his life, exercise reliably and yet he got affected with lupus.”
As understood, having an anti-inflammatory diet can help which means a healthy diet devoid of processed meat like hot dogs, vienna sausage and burgers is recommended.
“These things that come out of tin and plastic; all those are processed foods and those foods hardly have any nutritional value. A good piece of breadfruit on any day is better than most of them.”
Dr. Drew said such foods give a lot of inflammation to the body and “where there’s inflammation there is disease and where there is disease, there is death. Inflammation is responsible for most of the diseases- heart disease, diabetes, hypertension, and mostly it is because of what we eat and the other thing is having the extra weight. That, too, because when you have extra weight you produce a lot of estrogen and the estrogen makes a man look more feminine and it makes a woman look more feminine but that in itself can cause a lot of diseases.”
Nutritionally rich foods such as fruits, vegetables, nuts, whole food, fibre and turmeric as well as drinking water are recommended to be part of one’s diet.
“Things that are natural and the least processed things are the more natural they are. The healthier they are not just for lupus but for almost any other disease,” Dr. Drew advised.
He cautioned that processed foods have “a lot of chemicals and those chemicals have consequences that lead to diseases and so we are suspicious that these foods that are processed, are contributing to these outer immune diseases where disease attacks the body just like with lupus.”
As gathered, the hydroxychloroquine is used to treat lupus and helps significantly but when that drug does not work it affects the patient’s immune system. Also, when such is not strong enough, patients have to be given cancer drugs that suppress the immune system so it cannot attack the body.
“but if those antibodies are also to fight cancers and also to fight infections, if you are suppressing them to protect you from the surge of lupus…now you are exposed to all types of infections and you’re also exposed to having cancer do it means therefore it is a double whammy,” Dr. Drew pointed out.
The Internal Specialist talked about liking this year’s theme in bringing more public awareness because a good number of people in St.Kitts are dying from lupus “and people are like ‘What is lupus?’ and so a lot of people don’t know [about this disease]. A lot of females are affected by it.”
“We (the medical fraternity) don’t understand how people can go through life [and] have a lot of difficulty with this disease and therefore we need to know so that we can support them in whatever way we can.”
An illustrative image for lupus awareness (source:digjamaica.com)