By Lakhram Bhagirat
We quite often take a lot of things for granted but imagine if someone told you, one day, that you can never again be exposed to direct sunlight. Your world would suddenly become dark and the warmth of the sun’s rays that kissed your skin would most definitely be missed.
At just 14, Shazeda Sulaiman was told that the direct sunlight affects her and has since been diagnosed with lupus. Just over three years later, Shazeda is showing that her condition does not mean a limitation, rather she is using it to gain a different perspective on life.
She believes that her current diagnosis is a prelude to better days ahead.
The Mayo Clinic describes lupus as a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus. Some people are born with a tendency towards developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for lupus, treatments can help control symptoms.
The now 17-year-old has set her goals and outlined her path towards achieving them and not even lupus can keep her down. The President’s College student sat the 2019 Caribbean Secondary Education Certificate exams and attained 10 Grade Ones and 2 Grade Twos – a feat she felt that she could not have accomplished.
Life is far from comfortable for her since she is in pain for 90 per cent of the time but would never complain. She is more reserved and fights her battles silently.
Because of lupus, Shazeda would have missed a lot of school days because of numerous doctor appointments and even hospitalisation.
“I missed a lot of days because I have a lot of doctor’s appointment and I was once hospitalised and missed a few weeks at school. I did not get to write that end of term examination but I was still promoted to the next class because the teachers there were very understanding,” she remembers.
Though most of the teachers at the President’s College know about her illness, Shazeda related that few of her peers do. She is still shy about it and is learning more about her condition as the days go by.
Attending school was a chore but despite her pain, Shazeda pushed ahead in order to ensure that she achieved every goal she had set. She was not thinking short-term, rather she thinks way into the future. The aspiring entrepreneur is hoping that one day she enters into the manufacturing sector since that is where her heart lies.
Tracking back to the gruelling preparations for CSEC, Shazeda said that many times she felt like giving up but knew that she had it in her and that was what drove her.
“I am a very determined and strong person and when I really want to get something done, I really put my mind to it and I always accomplish my goals. To prepare for CSEC I would go to school and then lessons afterwards. I would come home and study every night too and also went to lessons on the weekends.
It was very hard because I have lupus and to be able to cope with all the physical and emotional pain and at the same time to be dedicated to my academics was very tough. I have arthritis, I would get rashes and a lot of abscess and swelling in my joints.”
The hard work paid off when she saw her results. She took some time to appreciate all that she had accomplished thus far before sharing her achievements. She remembers being dumbfounded when she got wind of her results.
“It was hard for me because I was sick and all but I did really well and I am proud of myself and I did not expect these results. I was extremely proud because knowing what I had been through and I done this well.”
There were days when all hope was lost for Shazeda and all she did was sit down and question the universe. She sought answers as to why she was diagnosed with this illness that inhibits her. She was very tired of the pain, constant doctor visits, and overall missing out on lots of activities a ‘normal’ 17-year-old would be engaged in.
“I had lost hope, to be honest, but my parents had to find hope and they kept pushing me and telling me that everything is going to be okay. I learned that I am stronger than my circumstances and if you put your mind to something, then you can get it done. I lost hope because it was hard to go to school and come back home and study whilst you have all these symptoms to deal with plus focus on school. I question why me often, but I am comforted that maybe I am being prepared for something bigger in life.”
Painkillers were her best friend during studying and even now, they remain her best friend as she aims to take over the world one stride at a time.
Since her diagnosis at the age of 14, Shazeda has had monthly doctor’s appointments and is constantly on medication to manage her symptoms. The medication has side effects that mostly affects her vision. With the medication she is on, there is a strong possibility that she may develop glaucoma and cataracts in her eyes.
Lupus robbed Shazeda of many opportunities while she was in school. She would miss class trips because she had an appointment to examine the progression of her disease, she could not be a part of daily assemblies at her school, and she could not go in the sun to part take in all the activities her friends were a part of.
Without the support of her parents, Shazeda would not have been able to accomplish all that she did. Her mother, Shenny Hardowar, was all beaming when she spoke with the Sunday Times Magazine. She said that her heart swells with pride every time she looks at her child.
For her, the victory is even sweeter because she understands the struggle her daughter went through.
“In Second Form, she got really ill and from that, we took her to different doctors and she got diagnosed with different illness but she continued to get sick again. Her present doctor started to treat her and start to eliminate the sickness until she diagnosed her with lupus and ever since then she is on the treatment.
The thing is that I am so amazed and so proud of her. She showed me how strong she can be. She is always dizzy, she always has headaches, taking medications and all of that and still, she doesn’t want to sleep. Many nights I does come down and take away her paper so she can sleep.”
Prior to Shazeda’s diagnosis, the family had never heard of lupus and now they are hoping that there is more awareness.
When asked about her advice to parents of children going through the same thing as her, Hardowar said “parents with children that have any immunity disease I want them to know that their children are stronger than they think because, for example, my daughter showed me her strength. Parents should support them and be there and let them know, encourage them because the sky is the limit.”
