Founder of Wings of Hope Lupus Support Group, Reshma Ragoonath, is having a busy month.
Not only is she organising the group’s third annual Wings of Hope community event this week, but she’s been featured widely in her home country of Trinidad recently, as well as by the Lupus Foundation of America, for her brave struggles with the disease and her efforts to raise awareness about it.
Ragoonath, a producer and news editor at Compass TV, said, “Spreading awareness about lupus helps educate the community about the illness and the challenges those living with this disease experience.
“It also helps encourage support, understanding and compassion because, apart from this disease being physically debilitating, it takes a huge mental toll.”
May has been designated as Lupus Awareness Month, and the annual Lupus Awareness Day is marked on 10 May.
To mark Lupus Awareness Month, buildings throughout Cayman have been lit in purple, the colour that signifies the condition.
Journalist Ragoonath, who has lived with lupus for 15 years, set up Wings of Hope in 2023 to help inform people about the incurable autoimmune disease and to lend support to those suffering from it.
She was featured in Trinidad’s Sunday Guardian as a woman empowering others through her lupus advocacy, in which she spoke about her journey with the disease.
Lupus symptoms vary widely and include fatigue, hair loss, joint inflammation, depression and painful rashes. The disease can be difficult to diagnose, as Ragoonath found when she first started experiencing symptoms. It was only after a plethora of visits to doctors and a host of medical tests that she was diagnosed in October 2010.
Before that, she and her doctors did not know why she was having severe headaches, body pain and swollen joints.
While lupus is a chronic disease, for many it is an invisible and silent one, as the symptoms are not always obvious to an observer. This is one of the reasons Ragoonath says she established Wings of Hope, to give a voice to those suffering silently.
As she told the Lupus Foundation of America, “The thing about lupus or auto-immune conditions is that often you cannot see the pain or the aches a person is feeling; it’s not like a broken leg or arm, which you can see.
“This is why compassion and understanding are so important when someone is struggling with these conditions.”
The disease predominantly affects women, who are nine times more likely to develop it than men, and it usually begins between the late teens and early 40s.
The logo of Wings of Hope is a purple butterfly, chosen to reflect the typical butterfly-shaped facial rash that many sufferers experience when undergoing a flare-up of symptoms.
The group’s Facebook page has 149 members and growing, with many of those being either lupus sufferers or related to them. The number of lupus patients in Cayman is not known, as there is no registry for the condition.
A lupus awareness event, hosted by Wings of Hope, the Health Services Authority and Doctors Hospital, will be held at 4:30-6pm on Wednesday, 28 May, at the Hibiscus Conference Room at the Anthony S. Eden Hospital, formerly Cayman Islands Hospital.
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