THE Guyana Haemophilia Society (GHS) recently held a fund-raising activity in aid of assisting its members in spreading awareness in Guyana about haemophilia.
It was on the basiss of the fact that most Guyanese are uninformed of the existence and seriousness of this disease, that the society was formed, said the current President of GHS, Laurence Bakhsh.

This newspaper spoke to Bakhsh, who shared that the organisation currently has a membership of 30, but it is open to the Guyanese public to come on board to support this cause.
“Our membership consists not only [of] haemophiliacs, but also relatives and friends who are aware of the condition and want to lend their support. We are open to the Guyanese public and we are hoping that people show some kind of obligation towards us, because it is a very worthy cause, and support our fund-raising activities so we can carry out our goal to spread awareness,” Bakhsh said.

He explained that it was him and two of his family members who came up with the initiative to establish the organization, since he was diagnosed with factor A of the disease.
“The disease has different factors and each factor has a different treatment allocated to it.

One of the main reasons the organisation started was because most persons in Guyana don’t know of this bleeding condition. Most doctors are not au fait with the disease and they can misdiagnose you; and they could administer blood thinners, which is more detrimental to your condition, because your body is having problems to clot. And because having problems clotting, then you going and use a blood thinner will cause your body to even develop more severe problems,” the man explained.

Earlier this year, when GHS was launched, Director of the Georgetown Public Hospital Complex (GPHC), Dr. Pheona Mohamed-Rambaran, said Guyana is inexperienced in management of the disease.

The main treatment for haemophilia is through a replacement therapy known as a clotting factor, which Guyana does not produce and tests are sent abroad to be diagnosed, since this service is unavailable locally.

The clotting factor is therefore received through Project Share, a US-based humanitarian programme which donates blood-clotting medicines to developing countries.

However, Dr Mohamed-Rambaran said the quantity received from Project Share is inadequate to manage the country’s identified patients, which points to a need for additional mechanisms to be put in place.

Bakhsh said that this is their major concern and what they are hoping can be done for them by the Government of Guyana, is to offer the test locally so that persons can be diagnosed. To have the diagnosis done privately he said, costs no less than 70,000.
In addition to not having access to the test locally, he also shared that the medications are not available in Guyana.

Apart from the awareness, these are some of the issues GHS said they are going to address for the benefit of Guyanese haemophiliacs.