The Voice of Lupus Foundation

A Pillar of Strength

Voices of Lupus

Reeanna

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. Hello everyone, I am a lupus survivor and I have started this foundation to give those who have this chronic debilitating disease a voice in Trinidad and Tobago. I have had lupus symptoms since I was 13 years old but was officially diagnosed in 2006. Lupus changed my life forever. I could sit here and tell you that it ruined my life and snuffed out all my aspirations and dreams. My experience in the media spans 10 years in print, radio and television. However,  I prefer to see what lupus has done to make me a better person. They say life throws you a curve ball; they say every cloud has a silver lining; they say life is 20 percent what happens to you and 80 percent of how you deal with it. Regardless, acknowledgement is painful sometimes; nothing but truth staring me in the face… for over a decade, lupus has been my truth. It is my hope that this foundation will make a difference in edifying and helping the nation to understand this autoimmune disease.

My journey ahead is a long one, but I am empowered by my trials and many afflictions… I embrace each new day with a determined spirit knowing that I am more than a conqueror, I am an overcomer!


Reshma

I have lupus, every day I fight for my life, and for the lives of the people I love, because I know they love me too and do not deserve to feel the pain of losing me. I find strength in knowing that through The Voice of Lupus Foundation, we can facilitate awareness and provide support to sufferers, both patients and families. One of the important life lessons that I have learnt from going through this experience is gratitude. I am grateful for everyone in my life that continue to be there for me. I say “Lupus sucks”, but I see this as a great opportunity, an opportunity for me to realize the love that I have around me. Some people go their entire lives without knowing and acknowledging that. So thank you, Lupus.


Dianne

In 2006 I was diagnosed with Discoid lupus. Since then my condition has been fairly under control with some progression of the disease and a few other flares of disease activity along the way. Two years ago, my symptoms got worse and I was diagnosed with Systemic Lupus Erythematosus and Lupus Nephritis. I still experience some fatigue, sun sensitivity and I still occasionally develop small lesions. I also have swollen ankles, legs and sometimes swelling in my face. This has greatly influenced my diet and placed limitations on what I am allowed to consume in order to prevent further kidney damage. I am very grateful to have an excellent support network in my family, friends and even my doctors. I feel blessed to be able to still function as a healthy individual more often than not. Some of us are not so fortunate.


Shania

I am 12 years old and I was diagnosed with SLE in 2008. Since my diagnosis I’ve been hospitalised four times. I am lucky because most of the time I am fine, although I’ve had to miss school because of my sickness I’ve still managed to maintain my grades. I cope with it very well and have the support of my entire extended family.


Lazina

My name is Lazina Mohammed, and I’ve had (SLE) Systemic Lupus Erythematosus over 25 years now. Having lupus has taught me that you don’t always get what you wish for in life, so accept the things you are being given and learn to take it from there. Life is a stage and everyone has to play their part, but in the end the doctors have to give the last say. Lupus has taught me to appreciate what little I have going on in my life; I learnt the hard way to cope because my daughter was positive for lupus. I have learnt to live with Lupus but hope that in the near future a cure is found, not only for me but all Lupus patients to share in the glory.


Sherina

I was diagnosed with Systemic Lupus Erythematosus, Rheumatoid Arthritis and Raynaud’s Syndrome at the age of 13 in the year 2000 (12 years ago). I am 24 years old now. Lupus changed my life, but I believe God doesn’t give you something you can’t handle, and I guess He knew I was strong enough to go through this, and he sent an angel with the exact same thing I was going through to take care of me. That angel is my mother.


Maureen

As a young child I was always ever sickly. At age nineteen I collapsed and went into a coma and suffered a mild stroke. It was then they discovered that I was a diabetic. For years, I was constantly asked if I had lupus as I have had several miscarriages. My 21-year-old son Andrew who is my first born, is my 7th child as all the rest died. I never bothered to check for lupus, thinking this could not have happened to me. However, I was tested positive for SLE. My doctors jokingly tell me it is a miracle that I am still alive.

Living with Lupus is not nice. If I rub cream on my skin and go out I will feel scorched or have sunburns. At nights even the lights burn me. I would often declare “Lord your word said that the sun shall not smite me by day nor the moon by night.” There are times I feel I can scream but I convince myself that that too shall pass. I know God is putting me through the fire for a reason. I have faith in my God to bring me through each time in the name of Jesus for with his stripes we are healed. I would declare to all my disease to get thee hence.


 

Malti

I am 55 years old and I was diagnosed with lupus since 1990. After many years of suffering with this auto-immune disease, today with God’s Blessings I am off all my medication.
With God’s guidance my method of staying well is:
Acceptance
Live one day at a time
Live life as an experience and learn from it
Know the do’s and the do not’s
Do not try to be someone else, just be yourself
Be calm and collective
Show love and give love


Ingrid

For years I struggled with fear, pain, tiredness, weakness, loneliness and side effects of medication. Thank God for bringing me this far… for seeing my children grown and a grandchild. I am grateful to friends, teachers and co-workers who stood with my children when I could not be there for them. My advice to other lupus patients is to try to have a good day, eat healthy good meals and ensure you take proper medication.


Donna

I have Lupus. There is not a day I wake up and say to myself gosh I feel fabulous. It is very hard to get off the bed. I have no energy and would stay in bed and pull the sheet over my head to sleep until I feel like Donna again. I feel exhausted, irritated and in pain. It is hard and emotional and you could never be too informed about how important your illness is. I’ve always read about how important it is to get enough rest. I am not the person I used to be. If I disagree with someone, I give in. I spend much of my days alone in my room. The only way I will be happy is if my illness is going to go and that is not going to happen. This means that I am doomed to be unhappy for the rest of my life. But NO I can work on changing the way Lupus makes me feel. When friends ask what I am doing to stay well, I tell them that I have learnt to look on the bright side of things and I think of others who are worse off than me and who can’t do the things I can do. I feel grateful and not feel sorry for myself. I thank Jehovah and my family and friends for the love and support they showed me.


Victoria

Following the diagnosis of lupus in 2010, I slowly came to the realization that my life will never be the same again. But now I know that I can adjust my life to cope with the things how they are right now. There are challenges I face every day but I always remind myself of how far I came. I get strength in that, in my endurance thus far. I sometimes forget though and feel like giving up but I am reminded that God has kept me going this far. He was always there with me keeping me going. He obviously has great plans in the future for me and I am going to live this life which He has blessed me with to the fullest. I will no longer be afraid because if I get scared or feel like giving up I will remember He is always with me.I must say Thank You Lupus!!! I have gained God, great friends, amazing family, and strength because of LUPUS!


Dana

I am Dana Hinds, from Sangre Grande and I’m 28 years of age. I was diagnosed with SLE in Feb of 2011.
In 2008 I was enlisted into the Trinidad and Tobago Regiment where I was able to successfully complete the basic 6 months Recruit Training, although I was told I was anaemic. In May of 2009 I graduated and was dispatched to my new base at the 1st Engineer Battalion. In September of that year I thought I was still recovering from the physical and mental draining of the rigorous training. I found myself on a daily basis complaining of always being tired, sleepy, joint pains (in all the joints, both small and large), hair loss, stiffness and swollen fingers and feet with the occasional finger tips turning blue after being in a cold room over a period of time.

I then sought the advice of the regiment medic who found this strange and sent me to see one of the military doctors. Dr. Dowlat recommended lighter duties with rest and pain killers. But my pain did not ease and I found myself in and out of the hospital with no answer to why I was ill. I started seeking the interest of any and every doctor, and I was told about from a neurologist who diagnosed me as having Fibromyalgia and prescribed Lyrica. I also sought alternative medication which both seemed to make my problems increase. In November of 2010 after numerous attempts to find out what was wrong, and being in and out the hospitals, and experiencing a miscarriage in June of 2010; I revisited the regiment’s doctor. I was later sent to see a rheumatologist.

Following a series of blood tests, I was diagnosed as having Mixed Connective Tissue Disorder. I was put on Plaquenil, Mobic, Stemetil and Prednisolone. I was then sent to join the Rheumatology Clinic at the POSGH where Dr. Poon-King confirmed a diagnosis of Lupus (SLE). Being diagnosed with SLE, I went through stages of being angry with the world wondering why me. I was also in denial, just hoping and praying this sickness would disappear. I’m still struggling to accept all that comes along with this journey as each day is unpredictable and a challenge. My dreams and plans of being a soldier were all crushed and stolen from me. I have learned to appreciate the simple things in life, and that I’m mentally and physically stronger than I thought I was. I saw that I was not alone in my suffering as I met with supportive people on and off line at The Lupus Society and The Voice Of Lupus Foundation. Even though my journey to being diagnosed was a short one, my only wish is to be able to find and accept my new life and give thanks despite all my trials and tribulations.

I guess what I’ve learned most is that God never gives us more than we can bear.


Curtis

My name is Curtis Ramkissoon and I am 39 years-old. I was diagnosed with SLE approximately three years ago. My first symptoms included internal fever, headache, joint pains, fatigue and general weakness. As the disease progressed, I started experiencing severe back pain and cramping in both my legs and hands. About 4-5 discs in my spine would  shift out of place. This affected my internal organs especially my kidneys, heart, lungs, liver, prostate, intestines and my nervous system. I was also diagnosed with osteoporosis. I was sheltered; I heard all the negative things about lupus and never any positive. Lupus took a lot from me, it took away my job as a maxi taxi driver and also the ability to do any physical labour. However, lupus has taught me to become patient and to persevere  under pain and pressure. Most of all it made me depend on God for total deliverance. My desire is to encourage other lupus patients like myself to believe that there is hope for us but we must continue to trust God.


Kevin – lupus survivor

Limall – lupus survivor

Valarie – lupus survivor

Rajkumarie – lupus survivor

Candice – lupus survivor


Members of The Voice of Lupus Foundation – Front row (L-R): Reeanna Harrilal – President of the VLF, Malti Narine, Marie Donna Butts, Ingrid Arneaud, Maureen Hosein-Ali, Sherina Mohammed, Reshma Cooke – VLF Director, Lazina Mohammed, Valarie Chance, Dana Hinds, Sara Affonso-Smith (not a VLF Member), Dianne Seepersad – VLF Director; Back row (L-R): Curtis Ramkisson, Limahl Theodore, Candice Phillip, Kevin Redman, Sandra Rogers, and Victoria Persad.