Reeanna Harrilal – A champion for lupus sufferers

WHEN unfamiliar symptoms wracked her body, Reeanna Harrilal struggled silently.

Because the symptoms were invisible to the naked eye, Harrilal, a former broadcaster, bore the brunt of cynics who voiced doubts, claiming she was pretending to be ill: “But you not looking sick.”

Coming to terms with a lupus diagnosis later, she vowed to use this painful episode to become a champion for fellow sufferers.

“Lupus wrecked my life. I had a really nice career as a broadcast journalist, but I lacked awareness and was not able to stand in my truth at the time.

"I did not even know what was happening to me. All I know was that I was struggling to get out of bed. I was in pain all the time, but when one looked at me, no one saw that I was struggling. Nobody saw my pain, I was...crying silently for help.

"Unfortunately, because I did not have the emotional intelligence and support, instead of telling the truth, I made up stories, due to my inability to communicate with people what was going on with me.”

Finding her passion from pain, Harrilal registered the Voice of Lupus Foundation and the Lupus Learning Resource Centre as an NGO in 2011.

Lupus is a chronic autoimmune disease that affects millions of people worldwide, and the Voice of Lupus Foundation works to provide support, raise awareness and fund research to improve the lives of those affected by it.

Harrilal has donated her home in Pleasantville, San Fernando, to give lupus a voice. Patients diagnosed at the various regional health authorities (RHAs), she said, are referred to her organisation, where they receive counselling, support and educational resources.

Her efforts to build and foster greater awareness of lupus in TT were recognised in 2022, when she was awarded the Humming Bird Gold Medal in the sphere of community service/education and empowerment.

“The nomination came as a pleasant surprise, and I am overwhelmed and humbled to be recognised and rewarded on a national level for the work I embarked on more than a decade ago,” she told the Newsday in an interview. “I thank God for His grace and mercy and for equipping me and choosing me as a worthy vessel to be used to make a difference in the lives of those who suffer silently with lupus.”

Committed to the cause, Harrilal has embarked on another level, this time to set up a free clinic to reach as many lupus sufferers as possible, "as accessing care in the public health sector is atrocious," she said.

To this end she has partnered with Cara Hotels, to buy, in the first instance, two containers. Complete with electrical fittings, each unit will cost around $80,000.

“Most medication that is used to treat lupus have debilitating side effect like vision loss, dental issues (and) becoming diabetic due to steroid use.”

To help manage those NCDs while at the same time countering the inefficiencies in the public sector, Harrilal said the containers would be transformed into doctors' offices to provide basic vision and dental screening and blood pressure and diabetes testing. All the doctors are volunteers.

The fact that she lives in an HDC home restricts any major renovations or additions, hence the reason for container units. Harrilal said not having ready finance or staff, clinics will open once or twice a week, based on the availability of medical staff.

“The longest journey starts with one step. The Lord has given me a vision and I am running with it by faith.”

In addition to Cara Hotel, she said Cadbury and Arima Lions Club have made donations which are being used to cast the foundations to accommodate the containers.

“I really want to express gratitude to Cara Suites for their support and generosity.

"When I was diagnosed with lupus, there was no hope, there were no NGOs raising awareness or providing support. There are many women struggling to access proper healthcare or even getting medication. Some have to choose between buying feminine products rather than their medication.

“This is where my organisation comes in, ensuring women don’t have to make that choice, and finding creative ways to raise awareness and provide that tangible support patients need. We also started a project to end period poverty, but also to provide basic food for patients."

General manager of Cara Hotels Hassel Thom told Newsday he believes this is a marriage made in heaven.

He said when the hotel was planning its first all-inclusive charity event in May, the management felt it was critical to align with an organisation under the radar but in need of support.

Unknown to him, the team handling the charity chose the Voice of Lupus Foundation, which met his approval, as his daughter has lupus and his wife lost a first cousin to the disease.

“When I spoke to my daughter, the coincidence and connection became clear, as I learnt Reeanna was the person who referred her to the specialist who diagnosed her with lupus.

"For years my daughter suffered. We could not understand why this very ambitious young lady could not hold down a job.”

His initial conversation with Harrilal, he said, lasted 45 minutes.

“The passion I have for tourism is the passion I heard in her voice for running the Lupus Foundation.”

Funds that have gone towards the foundation came from the all-inclusive Twilight Over the Bay, which saw performances from entertainers such as Ronnie Mc Intosh, Ziggy Rankin, Jaron Nurse, Michelle Xavier and Howie T, as well as foot and back massages from Alpha of Sanctuary Day Spa.

Thom promised, “We are not looking for a one-and-done. This is something we want to develop next year. It would give us some more time to go out and get more sponsors and advocates to come on board.

"When we set our minds and intention on doing something, we want to do it right. This is not just for show. Lots of people do charity events, but make sure they pay all expenses first and whatever is left over is given to charity.”

He said in his experience, good causes are the hardest to get support.

“We went into this (charity event) knowing we won’t break even, but we went into it with a very altruistic approach. It is about doing something that is good: that is what the CSR message is.

“It may not be where we wanted it to be, but sometimes success comes in increments and we have to be mature enough to accept that first you have to chart the way before you can generate the kind of momentum you want to.”

Harrilal said while the foundation has made great progress in raising awareness, there is still a lot of work ahead to truly shine a light on this disease and help others to understand it.

What is lupus?

Lupus is a chronic autoimmune disease – meaning that it occurs when your body's immune system attacks your own healthy tissues and organs.

This is because the body’s defence system cannot differentiate between viruses, bacteria and other germs and the body’s healthy cell tissue or organs.

There is no known cure for or cause of lupus, but scientists believe a combination of things triggers the immune system to attack the body. Doctors can manage it with treatment, but it will not go away.

It can cause severe pain and inflammation.

There are several types of lupus, from mild to severe, including neonatal lupus, a rare type that affects newborn babies.

The inflammation can affect many different body systems, including joints, skin, kidneys, blood cells, brain, heart and lungs.

If untreated, the risk of heart disease and osteoporosis in women is higher.

It affects more women than men, and can be difficult to diagnose, because it has wide-ranging symptoms that may mimic other conditions. However, doctors say early diagnosis is important to help prevent complications.

Early signs in females include fatigue, hair loss, joint pain, and swelling.

No single test can diagnose the condition, but a review of medical and family history, complete physical exam, blood and urine tests, skin or kidney biopsy may assist in making a diagnosis.