Apr 21, 2018 News
With moves apace to advance efforts to detect persons living with haemophilia, a blood disorder that inhibits clotting, talks have ensued for the establishment of a Haemophilia Treatment Centre.
“That’s going to be wonderful,” said Dr. Nichole Nedd-Jerrick as she spoke of the possibility of the introduction of a haemophilia treatment centre in Guyana.
Dr. Nedd-Jerrick is affiliated with the recently launched Guyana Haemophilia Society [GHS].
She disclosed that once a treatment centre is in place, it could cater to cases of emergency, prophylaxis and maintenance care for patients with haemophilia.
Since there are currently no care and treatment centres in Guyana, she noted that the treatment options for patients are confined to hospitals and other health care facilities that they would visit in cases of emergency.
She noted that the onus is usually on haemophiliacs [patients suffering from haemophilia] who become involved in an accident, for instance, to explain their condition to attending health care workers when they seek medical care.
“You would find that a lot of the haemophilia patients know a lot about their conditions and they can actually tell medical practitioners ‘I am suffering from this therefore do not give me an injection into the muscle’ and that kind of thing,” said Dr. Nedd-Jerrick.
She added, “Currently, the treatment options that we have [for haemophiliacs] are factor concentrate, whole blood, fresh frozen plasma and something called cryoprecipitate. Factor concentrate is the best when you have an absence of the factor that makes you have the condition, so if we can replace the factor then it is going to help with the bleeding.”
There currently exists a United States based organisation called ‘Project Share’, which helps to supply the quite costly factor concentrate, she noted.
‘Project Share’ is a humanitarian programme that assists persons with haemophilia across the world, according to Dr. Nedd-Jerrick. The assistance currently entails about 18 vials of factor concentrate being donated to Guyana annually to assist patients, the doctor informed. Haemophilia is a mostly inherited genetic disorder that impairs the body’s ability to clot blood, a process needed to stop bleeding. This results in people bleeding longer after an injury, easy bruising and an increased risk of bleeding inside joints or the brain.
A defect in one of the genes that determines how the body makes blood clotting, Factor Eight or Nine, causes haemophilia. These genes are located on the X chromosomes. Chromosomes come in pairs with females having two X chromosomes and males having one X and one Y. However, only the X chromosome carries the genes related to the clotting factor.
A male who has a haemophilia gene on his X chromosome will have haemophilia. Meanwhile, when a female has a haemophilia gene on only one of her X chromosomes, she is a haemophilia carrier and can pass the gene to her children.
Reports suggest that sometimes carriers have low levels of clotting factor and also have symptoms of haemophilia, including bleeding.
Essentially, clotting factors are proteins in the blood that work together with platelets to stop or control bleeding.
“There is a huge hospital cost as it relates to care and treatment of patients with haemophilia,” said Dr. Nedd-Jerrick. She noted that while treatment for patients at the public hospitals and other public health institutions is free, the treatment at private institutions is understandably not. But at both institutions, the cost of the factor concentrate is still high and must be met if patients are to be properly treated. There are reportedly just over 70 individuals registered as haemophiliacs in Guyana.
Members of GHS, Dr. Nedd-Jerrick said, will continue to be exposed to information about haemophilia. In fact she disclosed that some of its members have already participated in workshops and programmes in collaboration with other societies.
The GHS is working in collaboration with organisations the likes of the World Federation of Haemophilia. Currently, there are 113 countries, which are active and registered members of the World Federation of Haemophilia.
According to Dr. Nedd-Jerrick, while Guyana is not yet a registered member, doing so is in fact one of the goals of GHS. She, however, explained that the Federation, “…already recognises us; they know about us. They have had members visit the country and visit our society, now it is just for us to be officially registered.”
Among the registered countries, there are 295,866 people with bleeding disorders, including haemophilia, Dr. Nedd-Jerrick said. “Haemophilia alone accounts for 187,723 persons.”
“This condition is worldwide. Over the years persons with bleeding disorders have been identified more, and thus there have been more cases…there has been a progressive increase,” stressed Dr. Nedd-Jerrick.
According to the doctor, proper care and treatment for such patients is important since in addition to pains and swelling, haemophiliacs can also face psychosocial as well as economic challenges.
The challenges faced by these patients can be farther reaching with some even being subjected to depression and other mental health issues. The challenge, Dr. Nedd-Jerrick said, can also extend to care-givers. “Let’s not forget about them, persons who are responsible for caring for those who suffer from haemophilia,” she added.
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