An ardent advocate for “sicklers”, Sabrina Kazim, is a ‘Special Person’

Jun 19, 2016, http://www.kaieteurnewsonline....is-a-special-person/

“If you live by the motto to contribute something significant to humanity, it means that you will be spending your time in a very selfless manner, and in a manner that will be beneficial. If you live your life like that you will have a lot less regrets.”
By Sharmain Grainger

“No human being should die and not contribute significantly to humanity.” This is a popular notion that has been shared by Motivational Speaker, Les Brown.

‘Special Person’ Sabrina Kazim

And this has been the maxim that Sabrina Kazim has been living by for many years. In fact it has served as an inspiration to her from a tender age, when she was told that she would not be able to conceive and would die by the age of 22.

She has essentially defied the odds. Today she is a 36-year-old mother of a beautiful seven-year-old daughter, and has plans to see her grow into a progressive adult.

Sabrina Kazim has been making a major impact along her life’s journey as part of her mission to make that significant contribution of which Les Brown has spoken. It is for this reason that she has today been chosen as our ‘Special Person’.

Kazim was born with sickle cell anaemia, a condition that has been described as a severe hereditary form of anaemia in which a mutated form of haemoglobin distorts the red blood cells into a crescent (or sickle) shape at low oxygen levels. She has suffered all her life from excruciating pain that is commonly associated with the disease. She constantly requires blood and opium or narcotic-type drugs to help ease her pains.

DIAGNOSED
Born Sabrina Perry on November 2, 1979, to parents Douglas Perry and Erlina Allen-Joseph, she grew up at a domicile at Bishop Street, Werk-en-Rust, Georgetown. She currently resides in Queenstown, Georgetown.

After several trips to the hospital as a four-year-old, she was eventually diagnosed with sickle cell anaemia. “I remember I had frequent bouts of illness and had to spend many hours in the emergency room. The symptoms were fever,

Hospitalised during one of her sickle cell crises.

intense pain, sometimes throughout the body or part of my body…it was so much that it caused my heart to palpitate…it would threaten to stop my heart,” Kazim recounted.

Growing up was understandably very challenging for her. She knew from a young age that something was very wrong with her since she was not allowed to even play in the rain as others her age group did. “If I did end up in the rain I would instantly start to cough, get a cold, get a fever, and would have to go to the hospital.”

Kazim recalled that she wasn’t even able to participate in Physical Education activities at Richard Ishmael – the high school she attended. The same situation had obtained when she attended primary school years earlier.

She recalled seeing her friends enjoying themselves and wishing that she too could be involved. “I couldn’t swim in pools or in the creek…”
She remembered how her mother would permit her to only enter the water once, and then forbid her from entering again, for fear of her suffering a crisis. This, however, did not mean that her sickle cell crises were fewer. Kazim recalled that they were so many that she was forced to stay away from school many days.

Even as an adult, the sickle cell-related crisis has not remotely subsided.

“Sometimes I would go an entire month without any issues, but then there are times that I can’t get through a week without issues…there is no schedule for a sickle cell crisis,” Kazim related.

WORK
She disclosed that soon after she graduated from high school, she was able to gain employment at the Guyana Revenue Authority (GRA). But because of her illness, many days she reported sick. But her career at GRA lasted from 1997 to 2007, at which time she was forced to leave as medically unfit.

With her daughter Zaara.

“I am not upset that I had to leave, as there were way too many submissions of leave forms because of me falling ill. I accepted that it was time to leave.”

In fact, she confided that “I really didn’t know how long I would have been able to continue, because you are working at a very busy government agency and you had to be active….even if I wasn’t physically active, my brain had to be, because I was dealing with taxes,” Kazim related.

She was, however, grateful for the work experience she was able to gain there.

But according to her, it was only too clear that sickle cell anaemia was affecting every aspect of her life. “The choices you make, work, finances, family, friends. There were times friends who felt that I really didn’t like them because I couldn’t hang out with them…they simply couldn’t understand that I was actually always sick,” she reflected.

STRONG-WILLED
Although unable to do many things that she desperately wanted to, Kazim, even as a little girl, was simply not prepared to die. This was even after being reminded time and again by medical professionals that because of the constant pain she suffered she would not be able to live many years into adulthood.

But she loved life enough and believed unreservedly that the Creator would see her through, even on the rough days. She, moreover, disregarded what was spoken against her life.

“I have always been a strong-willed person, so even when I went into crisis state, I always believed that the rain would stop at some time and the sun would eventually come out, and that is what helped to keep me going,” said Kazim.

In the company of other sickle cell advocates.

Before conceiving her daughter Zaara, Kazim was able to tie the blissful wedding knot. But this was not before she ensured that her soon-to-be husband was free of the sickle cell trait. When Kazim was old enough to understand, it was explained to her that because both her parents had the sickle cell trait she was born with the disease. There was simply no way she would have allowed herself to conceive a child who would suffer as she has.

“With God and the support of my mother and my father I was able to beat the odds…they have really been there for me,” said Kazim. She pointed out that “sometimes I am shocked that I have been allowed to live so long.”

But despite her will to stay alive, there were some gloomy days. Kazim recalled when she wished her parents hadn’t met and conceived her, since the outcome was her experiencing constant bouts of severe pain that sometimes caused her to be on what seemed like the brink of death. “Sometimes I would pray so hard for a chance at a normal life without the whole sickness involved.”

WORST EXPERIENCE
But one of her worst sickling experiences might have occurred when she was married and living with her husband at Montrose, East Coast Demerara. It was in March of 2007 and they had just returned home.

A mild pain started in her left hand and she didn’t even suspect that a crisis was about to unfold. Before long both her hands were in pain and then her feet too were in equal distress. The pain swiftly started to spread throughout her body and Kazim was convinced she had finally met her end. It was quite a task for her husband to get her to a city hospital to seek help. The crisis lasted 24 hours.

Kazim recalled that although she desperately needed opium to appease the debilitating pain, she got none. “The attending doctor was one of the skeptics who thought that I was just a drama queen for the medication.

I was crying and begging; I felt that I was going to die,” recalled Kazim.

Since no help was forthcoming she decided to discharge herself at her own risk. Her husband, moreover, sought the services of a doctor who treated her at home for the following three months.

FACES
Kazim was overwhelmed by the thought that medical practitioners viewed her condition as not very serious, even when she suffered excruciating pain. In fact she would come to realise that many of them saw sicklers in general as merely “drug seekers”.

But it was after yet another daunting experience last year, at yet another medical facility, that she simply could not tolerate the treatment meted out to her and others inflicted with the disease. She decided that she needed to take drastic action.

Essentially she started to network with persons, sicklers and advocates, in order to put measures in place to start FACES. FACES is a Non-Governmental Organisation (NGO) with a mission to fight against the stigma associated with sickle cell.

The support of a number of organisations including the Ministry of Public Health and the Georgetown Public Hospital Corporation (GPHC) was forthcoming. FACES was established in April of last year with Kazim proudly at the helm.

“It came about because of a sense of having no choice, because having experienced many instances of discrimination and stigmatisation and abuse (denial drugs) at the hands of medical people, both at private and public (facilities), I thought that something had to be done,” said Kazim.

Since being established, FACES has held a successful blood drive as, according to Kazim, in addition to needing opium to help quell constant unbearable pain, sicklers also have a steady need for blood.

In fact the organisation she spearheads has been able to work closely with the National Blood Transfusion Service of the Ministry of Public Health to create an account designated for sicklers. But the mission of FACES doesn’t end there. This is in light of the fact that it was established to fight stigma and discrimination.

Moreover, Kazim revealed that her organisation has been working closely with the relevant organisations to create a suitable medical protocol for the treatment of sicklers and to ensure that it is utilised. Added to this, the organisation has been spreading awareness about sickle cell anaemia so that the public could get a better understanding of the disease.

But of course, those within the medical profession have been the main focus of the awareness efforts.

“We had a workshop in February where we specifically focused on bridging the gap between the sicklers and the medical people. It was mainly doctors and nurses and phlebotomists and sicklers, where we identified the things that we go through and the way that it affects us,” Kazim disclosed. Just last week a similar awareness workshop was held at the GPHC.

ADVICE
But even as she strives through FACES to ensure that the rights of sicklers are not infringed upon, Kazim has been instilling in many sicklers, particularly those still in school, that they too could make a meaningful contribution.

“I have a WhatsApp group for sicklers and some of the persons are teenagers still in school…I let them know that we are going to have some good days, and those are the ones that we have to focus on,” Kazim asserted.

Kazim has also been calling on sicklers to ‘let go’ of their past experiences where they were treated in a less than desirable manner and focus on a future where people better understand the disease and improved medical attention is available.

Intense awareness efforts about sickle cell anaemia will continue today and Kazim is expected to be in the forefront. Sickle Cell Awareness Day is celebrated around the world on June 19 and FACES is collaborating with the Ministry of Public Health and other entities to have a walk and run, starting at 16:00hrs (4pm) at the National Park, to commemorate the day.

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