Living with lupus: A call for greater support

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Lupus awareness advocate Jacqui Ballah-Joseph shared information about the disease with Glanvilles Secondary School students yesterday to mark World Lupus Awareness Day
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As the world marked World Lupus Day yesterday, a resident living with the often debilitating disease is calling for greater awareness and support for those with the condition.

Lupus is a disease that occurs when a patient’s immune system attacks the body’s own tissues and organs. Inflammation caused by lupus can affect many different body systems — including joints, skin, kidneys, blood cells, brain, heart and lungs – causing pain, fatigue and many other difficult symptoms.

Jacqui Ballah-Joseph, who has been living with the auto-immune disease for the past 13 years, explained how wider societal knowledge of lupus could help those with the ailment.

“A lot of times, the people who have lupus in their workplace especially, they are looked upon as being lazy and wanting to avoid work, when in truth and in fact they are fighting internally with this disease,” she said.

“You can’t see the pain, you can’t see a lot of the things that happen inside, like the heart and lungs, because lupus affects every single organ in the body and it is usually hard to see.

“So, I think, if we have more awareness, then if somebody says to an employee they have lupus and today they are feeling too tired — because fatigue is one of the things as well, and not just being lazy — then they would know how to respond correctly,” Ballah-Joseph said.

She told Observer that more interest groups including the media, healthcare providers and the Medical Benefits Scheme, need to join efforts in supporting those with the potentially deadly disease.

“You don’t see anybody except for the Lupus Association and just the people who have lupus. Other than that, I don’t see anybody really doing anything to sensitise the public.

“Even the media houses, most of the times when you hear anything about lupus it’s because myself or some other person post something on social media and you get all these calls saying ‘I want you to do this’ but nobody ever does something for lupus awareness without a knee jerk reaction when they see something,” she added.

She is also calling on people living with lupus to help those around them to understand the disease.

“I would like to encourage persons with lupus to do research, be aware of what triggers them, educate their friends, their family members and the people around them, because the more people who know about lupus, the easier it can be for us to get by.

“You know, you will get a little bit more sympathy, a little bit more understanding and those things do very well in helping you with your journey, with the mental part of your journey actually,” Ballah-Joseph advised.

Lupus can be difficult to diagnose because the 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 those who are affected by the disease.

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