The Voice of Lupus Foundation

A Pillar of Strength

Our Story

Greetings from the President/Founder of the VLF, Reeanna Harrilal

Lupus is the uninvited guest at a dinner party. It is the shadowy figure that has been lurking over your shoulder for many years until one day it stands into the light for all to see.

At least this has been my story.

As a lupus survivor myself, I was once a physically strong,vibrant and career driven woman, but it was gradually taken away due to this dreadful disease. However, it became clear that I had a choice to make. I could spend the rest of my life feeling sorry for myself as the victim of a tragic fate. Or, I could view my illness as a call to action.

My story is just one of the many thousands who face a diagnosis of lupus in Trinidad and Tobago. Many lupus patients are unemployed, simply because they are too ill to work or face discrimination from their employers; then there are those who simply cannot afford medical treatment.

It is our hope that this foundation through our programs of education and advocacy, will lead efforts to bring national attention and resources to shine a light on this largely medically unrecognized disease. We hope to build support for the needs of those affected by lupus and to elevate lupus to a place of prominence on the nation’s health care agenda.

The Voice of Lupus Foundation is seeking to aggressively conduct outreach efforts to increase public understanding of lupus and build support for people affected by the disease through:

• Nationwide awareness campaigns
• Proactive media outreach
• Innovative online content (blogging, website, documentary, etc) and social networking

The reality of LUPUS is brutally clear. In Trinidad and Tobago the number of persons being screened for the disease is on a steady rise.

Today I represent those who have lost the battle to Lupus and those who are survivors… I am here to bring our silence to an end. I once read courage doesn’t always roar, sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow!”

Can you imagine living life constantly in pain, always tired and fatigued… just getting out of bed is a challenge sometimes.

We may take refuge in our stereotypes but we cannot hide there for long. Because LUPUS asks only one thing of those it attacks: Are you human? And this is the right question: Are you human? Because people with Lupus have not entered some alien state of being. We are humans. Lupus survivors don’t benefit from being isolated or treated as outcasts. Each of them is exactly what God made: a person. Not evil, deserving of our judgment; not victims, longing for our pity. People. Ready for support and worthy of compassion.

My call to the nation is a plea for awareness. One day when I have kids, I want my children to know that their mother was not a victim but a survivor.

My message is clear: lupus is often misunderstood, and so too are those who are affected by this deadly illness. This message is simple: I hope my foundation, The Voice of Lupus Foundation, will bring about a greater awareness about lupus, and will provide an effective support system to patients.

My vision cannot be accomplished alone; I implore each one of you to support this cause. To the millions who are strong, I issue this plea: make room for compassion and sound policy. To all within the sound of my voice, I appeal: Learn with me the lessons of history and of grace, so persons will not be afraid to say the word LUPUS when I am gone.


Dera Harrilal, VLF director

I have watched my daughter Reeanna Harrilal struggle with this disease. It is very difficult and heartbreaking as a mother to see your daughter sick and helpless at times. Lupus changed my life even though I am not the one who has the horrible disease. I choose to be apart of this foundation to help men and women who are suffering silently like my daughter. We at the Voice of Lupus Foundation hope to provide an effective support group for all lupus suffers in Trinidad and Tobago.

 

 

 

 

 


Reshma Cooke, VLF Director

Lupus has changed many aspects of my life. I am a mother of two wonderful boys and the wife of a husband who has been my rock, my foundation, my everything. Living with lupus has brought new meaning to life and has changed my prospective of living. I want to help other lupus patients like myself by bringing hope and providing them with an effective support system. This is the very reason why I became a part of The Voice of Lupus Foundation.


Dianne Seepersad, VLF Director

Reeanna is a very close friend of mine, and we both have lupus. When she told me of her plans to start this foundation, I wanted to help where I could. Reaching out to other lupus patients like myself here in Trinidad is one of the main reasons I am apart of the VLF. We want to build a community of lupus survivors, share their stories and experiences of living with this disease. The VLF want patients to know that we get it! It takes only a person who has been diagnosed with lupus to understand what we go through on a daily basis when living with the disease. To this day, there are still many persons who do not know about this auto-immune disease. We hope to change that!