Lupus survivors never giving up

The foundation further states that people of all ethnicities, ages and genders can develop the disease, but mostly prone to women of colour who are of childbearing age, 15-44 years.

Symptoms range from mild to life-threatening and may include painful or swollen joints, sunlight sensitivity, hair loss and or anaemia, but once managed with good medical care, patients can lead full lives.

There are several cases of lupus in TT, but many suffer silently in an effort to avoid discrimination since some patients look just like you and I. Today I am highlighting two courageous people who have defeated the odds and live to tell their story with joie de vivre.

Sherwin Cooper aged 28 was first diagnosed at 18 and had to be hospitalised upon completing CXC exams after complaining of a fever for months. This came as a shock since Cooper was always fit, taking part in track and field and several sporting activities. He was also a member of the Trinidad and Tobago Cadet Force and his dream was to become commander-in-chief of the Coast Guard.

His dreams were dashed when lupus struck him at this tender age, but he says, “I accept that I am sick, but Lupus is not a death sentence and there is life after lupus.” Cooper has been in good health since this initial setback and still does some of the things he loves, like playing football and shares with a broad smile: “like the 1990s’ song says, (by Baz Luhrmann) I just wear my sunscreen.”

Cooper says that his family and friends are his inspiration as they give him a reality check whenever he feels down, but judging from his broad smile and positive outlook, one would think that this is not often.

This industrious young man did not let this stop him from excelling and says he just opened the next chapter of his book of life. He went back to school and was one of the first cohorts to graduate from the Ministry of Tertiary Education & Skills Training, Autotronics and Automotive Services Technician programme offered by the National Energy Skill Centre (NESC). He has been a certified mechanic for the past five years and is presently working for a leading automobile dealer.

He says the hardest thing he had to deal with was rejection and discrimination, as people often mistake his disease for other auto immune diseases. Although this hurts, he smiles and demands respect from anyone he meets. Jovially he says it’s easy for him to make friends and he plans to travel the world and even get married and have kids one day. His mantra is to never accept failure, “I just go back until I get it right.”

Cooper says The Voice of Lupus Foundation has been a blessing. “Before I met the founder Reeanna Harrilal, I thought I was alone. I prayed that I’d meet someone who had the disease and later heard her on the radio. After making enquires, we later met and I’m now grateful that I don’t have to walk this road alone. She’s really doing a lot for persons with Lupus.”

Harrilal is the founder of The Voice of Lupus Foundation. She is a woman with a big heart who has come full circle with her vision for helping others. Also a lupus survivor and having worked in the media for over ten years, she said her dream was to be like her mentor Barbara Assoon. She later realised that the foundation for her greater purpose lay in the media. She got her start at the Probe newspaper and soon got her big break to follow her passion in radio and television. Harrilal transitioned from reporter to on-air presenter and news editor until she came face to face with lupus.

She chose to ignore the disease when she was 17 years old thinking it would go away, because back in the days without Internet, the encyclopedia was the bearer of grim news. She did not want to face it, thinking that the knowledge of the disease alone would kill her and her dreams of becoming a journalist would also die with her.

Harrilal has been through the valley and is now in remission. She talks about how she has overcome some of the darkest moments in her life through the relationship she has with Christ Jesus. Having grown up in the church, she drifted away because of the demands of her job.

In 2010 she recommitted her life to the Lord and says “all the missing pieces came together: restoration, healing, deliverance, forgiveness and transformation.” She says the Holy Spirit led her to start The Voice of Lupus Foundation and she plans to change how Lupus is dealt with in TT through advocacy, awareness/education and action.

“The Faces of Lupus” initiative was launched in 2011 and for the first time a group of patients came together to give a face to the disease. One year later, she launched the “Hand of Hope” project and Harrilal raised funds to provide food, pampers, wheelchairs and walking sticks to underprivileged lupus and non-lupus (cancer) patients.

Harrilal says she is forever grateful to The National Lotteries Control Board (NLCB), Carifin Games and the National Gas Company (NGC) who have been the biggest supporters of the foundation. She also received support from the Tobago House of Assembly’s Chief Secretary, Orville London who remembered her from the media and invited her to address an audience of all Division Secretaries and administrators, as well as 23 health centres throughout Tobago as far as Charlotteville and Parlatuvier.

She said her foundation’s presence was very well received and she would love to set up a support group on the island of Tobago, once her foundation is able to receive the necessary financial support and manpower.

One of her challenges is obtaining statistics on lupus as well as having the required drugs such as plaquenil and cellcept available at health institutions throughout the twin-island.

Harrilal says her greatest reward is making her patients smile and knowing that she is making a difference in the lives of others. She loves greeting patients at hospitals as well as meeting lupus survivors like Cooper who she considers to be a hero, since “it’s mostly a woman’s disease and he carries on his daily life with such charisma and grace.”

May is Lupus awareness month and The Voice of Lupus Foundation commemorated the global event with an annual candlelight vigil in Port-of-Spain and San Fernando on May 10.
Harrilal gives hope to those suffering in silence by saying, “You may be lonely, scared and think you’re going to die, but you can fight it…once you have faith, there is life and hope.”
For more info contact Reeanna Harrilal at 327-0220, contact@thevoiceoflupus.com, www.thevoiceoflupus.com or Sherwin Cooper 306-6963/sherwincooper1@gmail.com