TRANSCRIPT OF SPEECH BY REANNA HARRILAL (Done by Patti-Leigh Hunte)
Introduction by Chairperson
I want to give a special welcome to Ms Reanna Harrilal of the Voice of Lupus Foundation, and if she could just spare us a couple minutes to say a few words, we would greatly appreciate it. Let’s welcome Ms Reanna Harrilal of the Voice of Lupus Foundation.
Speech by Ms Reanna Harrilal
It gives me great pleasure to stand at this prize giving ceremony, because this year is the first year officially that CARIFIN partners with the Voice of Lupus Foundation, to essentially help with our mission, which is to give Lupus a voice. I am a Lupus survivor, I choose to say survivor because every day I thank God for the privilege, in spite of the swollen feet and maybe sometimes the bent fingers, the days I couldn’t sleep 12 hours like everyone else I know, I was able sleep 12 hours again. I thank God for the opportunity to pioneer and to start an organisation that has been doing a lot of work to foster greater awareness in Trinidad and Tobago, and actually throughout the Caribbean and the entire world, because we are five (5) years old and this has been and exceptional year.
My director, another director of the organisation is here from New York, and he is the international officer that is based in New York and he actually partnered with the Lupus Foundation of America this year. That is a blessing in disguise, because Lupus has been existing in Trinidad and Tobago for over 20 odd years and under the initiation of (may his soul rest in peace) Curtis Wilson, who passed away last year, a lot more work had to be done and that’s why I essentially started this organisation, because as a survivor, I thought that more needed to be done to give the disease a voice, because people need to understand. I have people walk up to me and say ‘you don’t look sick, you sure you don’t need a man or try and boil some leaves.’ Many people thought I was going crazy and because I did suffer a nervous breakdown back in 2009.
It’s my journey and it’s been a process and I believe as a Christian, we go through things in life and adversities would always birth opportunities and that’s why I chose to deal with my disease. Lupus will never have me, but I may have Lupus but Lupus will never have me and that’s the attitude. For this year as I again reiterate, that it has been a very blessed year and I am speaking in faith – I am heading to Vienna later this month to go to the Lupus Federation, where they asked me to be the voice of the Caribbean.
You may ask what is Lupus? Well certainly, I make Lupus look good, (with a little bit of mascara, a little bit of lipstick and what have you), but my immediate family can attest to how horrible this disease is because they see me on my worst days. My worst days are something like having the flu constantly. We live in the beautiful island of Trinidad and Tobago and where we are right next to the equator and we get the sun and the sun is our biggest enemy and it’s the biggest enemy for me. These days have been hot (have you guys been thankful that you work in the AC?) These days I have been up at 98.1 and I am really so happy that I could work in the office with air condition and not have to deal with this horrible sun.
The symptoms of Lupus includes simple things like headaches, nausea, hair loss, weight gain, weight loss, joint pain, fatigue and fever. Then there are the worst symptoms in which your organs are involved, some Lupus patients suffer with kidney renal failure, some of them have swollen liver or bladder. I remember, when I was recently diagnosed in 2006 around there, my first worst symptom I experienced was losing platelets. My platelets just kept depleting, so it meant that even if I am walking and I do that (Ms Harrilal gestures to the audience), I stood a chance of bleeding internally, at least that’s what Dr Diane had said. I remember going to clinic back to back, and like every week I was in clinic and coming from the profession of media, (and I see a well-respected stalwart sitting in our midst from TTT, so he can attest), being a journalist, the demand is very extreme. And it really did take a blow to my career, but I want to stand here saying all of that, I know I am strained and I am saying all these things and it’s so much to share with you. I am so delightful to share what the experience has been that placed me in this position, where I could stand before you, because five (5) or six (6) years ago I did not believe that I would have lived, I did not believe I would be able to look at this disease and say ‘you know what, something positive came out of my life’.
If you to ask me if I regret having the disease, the answer would be no, I do not regret having it, but sure I wish I didn’t have to have it. But Lupus made me the person who I am today, it taught me so much an also to let go and to think of others and that’s it’s not about me. This foundation is not about Reanna Harrilal, yes, God allowed me to start it, but it’s about helping patients and giving patients the opportunity to live better and to live more healthily. To have an identity, to not be discriminated against because they may not look sick, because most patients and 90% are women. There is that 10% where men are affected, however men have blamed some women. You know why, because there is discrimination that is HIV and AIDS. Lupus is not contagious, there is no cure and if someone has Lupus – a woman – and she gets married, she is not going to give her partner it.
(I see some people yawning in the back there…so I am going to say thank you so much) Thank you so much for listening, thank again to CARIFIN, thank you so much to Wayne, thank you so much to the committee, I met so much wonderful people who took part in the weeks of activities. I myself tried to play brave and decided to do the one-lap around the savannah, then there was the aerobics day, we were there with a couple other Lupus patients. There is a concept of getting health in the forefront, and this year it’s Lupus, I would like to believe it’s maybe my charm worked in bringing you together to continue doing this and again I would like to say thank you for all those who actually supported from the financial sector and its Guardian and from those I didn’t see and I know different banks took part. So next year I hope you commit to making it better, more of your employees would come out and you are going to wear purple ribbons and I think and perhaps in talking with Wayne and the committee going forward we probably be using purple t-shirts so we going to paint Port-of-Spain purple. So thank you again.
Conclusion by Chairperson
Chairman of the CARIFIN committee, Mr Roberts, to do a presentation to Ms Harrilal. Every time I hear Ms Harrilal speak or I have a conversation with her, I always learn something new about the Lupus Foundation. It was indeed a pleasure hearing about it yet again, so thank you very much.