“Awareness is key to living with Sickle Cell Anaemia” – so says GSCA Members

Jun 23, 2013 News

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By Sharmain Grainger

Although the vision for a clinic designed to cater specifically to the needs of persons with sickle cell anaemia is yet to be realised here in Guyana, there is still hope that it will one day become a reality.
This is the optimistic view of Patron and one of the Founder Members of the Guyana Sickle Cell Association (GSCA), Ewart Adams, who has for all of his life been living with the disease. In fact, he has learnt that life does not have to be without meaning or any less enjoyable because of the infliction.

But at 51 years of age he still suffers some painful episodes that are referred to as “sickling crises” which is the result of a hereditary blood disorder. Individuals with sickle cell anaemia have red blood cells that assume an abnormal sickle shape (hence the name of the disease) which at times cause them painful joint and chest pains.
“I have had my share of different types of crises…very painful episodes,” Adams recalled during an interview.
He disclosed that his parents first recognised that something was not quite right with him as a young boy after visiting several doctors. He is the only one of six siblings diagnosed with sickle cell anaemia.
But his parents took especially good care of him which included him visiting the doctor every month, then the Children’s Ward at the Georgetown Public Hospital, and later the Medical Clinic there.
“The Medical Clinic back then – and I rather suspect it is the same situation now – was where you had hundreds of patients attend in a day and then you wait until the doctors finish running the ward and then they see the patients.”
Adams no longer utilises the service of the public hospital. He is however looking forward to the day when the Sickle Cell Association is in a position to offer all relevant services to sickle cell patients or those who may wish to know their status. He envisages a facility that is adequately manned by doctors and nurses who are all knowledgeable about the medical condition.
According to Adams, the Association was established in recognition of the need for persons to be better educated about the sickle cell condition. As such, in 1998 a group of persons – both patients and caregivers – decided to collaborate and form what would later be called the Guyana Sickle Cell Association (GSCA).
The mission of the Association continues to be to educate persons afflicted with the sickle cell disease and to ensure that better care is given by medical professionals. Additionally, Adams said, efforts were made back in the day to have newborn screening for sickle cell, in collaboration with an entity in the United States which would have facilitated the tests. However, this ambitious proposal never materialised, and he opined that it is a near impossible task to accurately quote the number of sickle

cell cases in Guyana.
“I can just say that there is a fair percentage of persons living with the Sickle Cell Disease and Sickle Cell Trait, both Afro and Indo Guyanese,” stated Adams, who has made a decision not to procreate, in order to play his part in helping to halt the disease.
And according to another member of the Association, Errol London, it was not until after his son at the age of nine months was diagnosed with Sickle Cell Anaemia (SS) or full-blown sickle cell that he decided to undergo an electrophoresis test. He had his test done at the Eureka Medical Laboratory where it was found that he had Sickle Cell-Haemoglobin C (SC). Although the SC condition is said to be a milder form of sickle cell anaemia, it is known to cause some of the same symptoms due to a usually low blood count level, which causes anaemia.
London’s wife was found to have the Sickle Cell trait (AS), which is however not recognised as the disease – it is a benign carrier condition. It is seen as an inherited condition where Haemoglobin A is produced more than S in the red blood cells. Such individuals are, however, generally healthy.
Research has shown that when two individuals, one with the trait and another with or without the disease copulate, it is not unlikely for at least one of their offspring to be diagnosed with full blown sickle cell disease.
According to London, his parents were first aware that he had a sickle cell condition when he was around 10 years old. He was the eldest of four children, but was the only one who suffered a few mild crises. However, by the time he was 18 years old his crises had completely stopped. He had no idea at the time that he could have passed the disease on to his offspring.
His involvement in GSCA was not until his first born son, who is now 12 years old, suffered a crisis and was taken to the Georgetown Public Hospital Corporation for medical attention. It was while there that one of the nurses at the hospital mentioned the Association, which sparked his interest.  He soon after became very much involved in the entity and just over a year ago was elected to be its President.
Speaking to the importance of the GSCA, London disclosed that it has a key role in helping to dispel the various myths about sickle cell anaemia, even as efforts are made to support persons who are diagnosed with the condition.
“We want to support them emotionally and in whatever way we can help them understand that they can have an improved quality of life in spite of their condition…that is our primary objective.”
Moreover, London also stressed the importance of awareness in the society about Sickle Cell Anaemia even as he disclosed that one of the things that the Association is aspiring to do is to encourage persons to know their Haemoglobin (Hb) type.  Haemoglobin is the substance contained in the red blood cells that takes oxygen throughout the body.
But knowing your Hb type is something that has over the years been deemed controversial, as London explained that some people may see it as an important factor before commencing an intimate relationship while others do not. However he argued that “knowledge is power and if you know what to expect you can make sensible and wise decisions”.
It is for this reason, London noted, the Association is looking to empower individuals with knowledge about the disease.
Although the entity has been unyielding in its efforts to spread the word about sickle cell through outreaches and other edifying ways, London admitted that the measures engaged are often restrained by financial limitation.
And since this area has always been a major concern, moves have been made to seek the support of the Health Ministry.
London informed that discussions with Ministry are in fact moving in a favourable direction.
“If we can be supported by the Ministry, financially, it can help us to do so much more in terms of outreach.”
The outreaches, according to him, are facilitated by a healthy mix of persons afflicted with the disease, as well as health professionals, mainly nurses.
Presently, the Association hosts meetings on the second Saturday of every month at the Guyana Nurses Association Hall located at the corner of Charlotte and Alexander Streets, in Georgetown. Approximately 35 members usually attend the meetings which are sometimes graced by a doctor, according to the GSCA President, who estimated that the Association has been able to reach more than 100 individuals with the disease.
With a focus on awareness, World Sickle Cell Awareness Day was observed globally on Wednesday last. However, there were no activities planned by the Association to commemorate the day as according to London “we prefer to have our focus being emphasised each and every day, because sometimes meaning and emphasis can be lost in a day. We prefer to have a sustained focus and drive towards awareness”.

 

 

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