by Eulana Weekes
St Kitts and Nevis (WINN): In observance of Lupus Awareness Month celebrated annually in the month of May, President of the St Kitts Nevis Lupus Hope Foundation, Kesha Isaac- Adams and Vice President Victorine Hanley are spreading awareness about the impact of the disease.
Lupus patients have diverse experiences. Some are common amongst patients, whilst others are unique. Speaking on Good Morning SKN, both Isaac-Adams and Hanley shared some of the experiences that a Lupus patient encounters.
Hanley expressed, “It starts with fatigue, that is a number one trigger that most Lupus patients have. Sometimes you feel like you’re tired and another time you feel like a truck ran you over and reversed. It’s like something’s sitting on your chest. It’s like you don’t want to wake up in the morning, you can’t move and then there are days when [you say] let me just get up, compose myself and go.”
A flare-up of Lupus activity in the body may come with other symptoms such as swelling, major joint and muscle pain, the butterfly rash, or lesions. The President of the Lupus Hope Foundation added that even the sunlight affects a person with the disease; noting that it’s challenging for those living in the tropics.
Isaac Adams said, “Being out in the sun, or being hot, the heat that gets generated actually has a burning effect on our skin. If we are, in particular, in flare and on steroids, it makes our skin thinner; and it makes us susceptible to sunburn easier. So, we always get advice to try and avoid the sun as much as possible.”
Both Isaac- Adams, and Hanley shared that at times they encounter depression, ranging from not being able to do random things such as hanging the clothes, to being questioned about being frequently ill or told about weight. Isaac- Adams in particular, shared her thoughts on having to cope with a job and having to deal with persons who do not try to understand what a Lupus patient has to go through.
She said, ” I think it’s unfair because I have worked in the Civil Service long enough to see persons with Cancer on the job. I have seen persons with other ailments and they get certain accommodations and then, here you are (Lupus patient) [questioning] “Why not me?”
The women indicated that the grace of God and family support have and continue to help them to cope with the disease.
Lupus is a chronic autoimmune disease that affects various parts of the body, with a person’s immune system attacking its own normal cells.
In commemoration of Lupus Awareness Month, the St Kitts and Nevis Lupus Hope Foundation has organised a Calendar of Activities. Lupus Awareness Day is celebrated annually on May 10, which is dubbed “Wear Purple Day.” Saturday, (May 14) will be Bummers Plan, a sensitization social at the Conaree Community Centre at 7:00 pm, in celebration of the birthday of a “fallen butterfly,” Delroy “Bummers” Delaney. A night of games will be hosted on Saturday (May 21) at 6:00 pm at the Shadwell Great House, followed by Remembrance Day on Saturday (May 28) at 5pm, at the same location. The Month of Activities will end with Paint and Sip with Lizca Bass at the Shadwell Great House on Sunday (May 29) at 4:30 pm. The month of Activities commenced on Sunday (May 1) with Corporate Service at the Antioch Baptist Church.
