Improved protocol for treating ‘sicklers’ emphasised at awareness workshop

Jun 17, 2016 News

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Many sicklers require opium, that is, narcotic-type drugs, to relieve excruciating pain that

they often suffer. Sicklers are persons who suffer from sickle-cell anaemia. This condition is a severe hereditary form of anaemia in which a mutated form of haemoglobin distorts the red blood cells into a crescent shape at low oxygen levels.

But seeking the pain relievers that they so desperately require to get through a sickle-cell crisis is not always readily accessible.
This is according to President and Founder of the Non-Governmental Organisation FACES, Ms. Sabrina Kazim. FACES means fight against Sickle Cell
Kazim, a sickler herself, confessed that she had had experiences where medical practitioners questioned whether her need for pain relief was in fact legitimate. But according to her, some medical personnel question the authenticity of the pain sicklers suffer and sometimes label them mere “drug seekers”.
But according to, Kazim refusing to grant sicklers the pain relief they need is in fact an infringement of their rights.
“If you are in pain, you are supposed to be treated and your pain is supposed to be managed not just for a period of time and sent away, but in its entirety,” Kazim asserted.

It was in order to advocate for the rights of sicklers, Kazim decided to establish FACES , in April of last year.
The organisation has been working closely with the Ministry of Public Health, GPHC, the Sickle Cell Association and other organisations and individuals.
“We want to work with the relevant organisations to bring about a change to implement a better protocol as it relates to sicklers at the medical institutions, because sicklers will be frequenting the medical institutions. Sickle-cell is not going to vanish into thin; you are going to need medical treatment and you are going to need it frequently. You are also going to need management to make certain that you don’t have frequent crises,” said Kazim.
But even with good treatment and management sicklers are still known to have frequent crises. “The thing about sickle-cell disease it has no schedule or agenda. I could have been well this week…I may get sick, get treatment and be sent home and by the next week I am back at a medical institution,” said Kazim, as she stressed the extent to which the disease could manifest.
It was for this reason, FACES collaborated with a number of organisations including the Ministries of Public Health and Social Protection, GPHC and other individuals to spearhead sensitisation workshop.
The workshop, which was held at the GPHC’s Resource Centre, saw the attendance of a number of sicklers of African and East Indian descent, which gave credence to the fact that the disease does not only affect persons of African descent.
This was emphasised by Chief Medical Officer, Dr. Shamdeo Persaud, who related that “it is not only an African disease. From the literature published it shows that several parts of South East Asia where people of East Indian origin come from have sickling too…”
Sickle-cell was yesterday deemed by Dr. Persaud as a unique condition. In fact he disclosed that globally, of the 500,000 persons who are inflicted, about 50 per cent of them will actually die before the age of five. “That is a huge toll…we are all sometimes amazed that a disease that seems so simple…can actually cause death and so much suffering,” said Dr Persaud.
Speaking on behalf of GPHC yesterday was Dr. Bramesh Beharry. He pointed out that his association with the disease was simply because he joined the medical profession. He revealed that since he was a boy he was confronted with the disease – a friend of his was inflicted with the disease. He claimed that he had long recognised that persons do not always believe how painful sickle-cell anaemia could be.
Dr Beharry has been exposed to studies in a number of countries about the sickle-cell disease and has been able to deduce that those inflicted in Guyana are at a disadvantage.
“Very often because of the stigma attached to it, people believe that there is an addiction…many of our professionals think that because someone comes and says I am having a pain, the myth behind it is that the person wants narcotic medication to feel high…”stressed Dr Beharry.
The awareness workshop, which saw a number of individuals making presentations on sickle-cell anaemia, including medical professionals and sicklers, served as a prelude to sickle-cell awareness day slated to be celebrated on Sunday.
According to Kazim, a number of activities will be done in commemoration of Sickle Cell Awareness Day that will not only be limited to that day.
“We will be working and we have been working with organisations such as the Ministry of Health and GPHC to work throughout the year to make certain that sicklers get better and find ways in which we can improve the protocol at both the public and private medical institutions,” Kazim asserted.

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