MONDAY MAN: His blood doesn’t clot – so what?
RAY GREENIDGE is like many other young Barbadian men. He is educated, ambitious, has a great personality, is fun-loving and sometimes believes he is funnier than he really is.
What separates him from others, however, and places him in a very small group of Barbadians is the fact that he is a haemophiliac.
According to the World Federation of Haemophilia, haemophilia is a rare bleeding disorder in which the body lacks a protein known as a clotting factor that allows the blood to clot normally, thereby causing the sufferer to bleed severely from even a slight injury. There are two types of factors: Haemophilia A (those missing factor 8) and Haemophilia B (missing factor 9).
Clinical medical officer at the Winston Scott Polyclinic, Dr Renée Boyce, further explained the different levels of haemophilia: mild, moderate and severe, depending on how much factor one has.
People with a mild case of the condition sometimes are not aware they have it. However, those who have a severe case, also referred to as “bleeders”, were almost certainly diagnosed with haemophilia when they were younger.
The condition is typically a hereditary disease and is not contagious. The vast majority of haemophiliacs are males but in very rare cases, it also affects girls.
The newly formed Barbados Haemophilia Association reports that there are only an estimated 50 Barbadians known to suffer from the condition.
In Greenidge’s case, he was diagnosed when he was just three years old.
Though the 26-year-old said he was too young to remember all the details, he recounted that his diagnosis came following what was then believed to be a straightforward burst lip. Luckily for him, his mother quickly realised there was nothing quite simple about the injury.
“She realised it was bleeding for an abnormal amount of time so she took me to the doctor and through due process I was diagnosed as a haemophiliac,” he recalled.
At school he received an injury to his knee and this was followed by bleeding in his ankle. Haemophiliacs usually have joint issues and he too experienced this, which prevented him from playing some sports.
Throughout primary school and the majority of secondary school, Greenidge used crutches to get around. In Class 1, he had two crutches but by the time he reached 18, he was down to using one. Now, he can get around fairly well but uses a cane sometimes for added support.
A former student of The St Michael School and later Combermere, where he completed his sixth form education, Greenidge said that coping with the condition had not been easy but he was never daunted.
“I try to keep a positive mindset. When a door or window closes, another one opens. The bleeding inside the joints is all manageable with the correct medication so I try to manage.”
In terms of work, he has to avoid anything that is labour intensive but this university graduate and others afflicted with the condition are very employable, he maintained.
In fact, after completing his degree in management and economics at the Cave Hill Campus of the University of the West Indies (UWI), he became an entrepreneur.
“Before I left UWI, I [worked as a social media marketer] for a couple companies which liked the work I did. A while back I got involved in marketing where I learnt a lot of skills and tricks of the trade. I realised I had a talent for it, registered the name and I’ve continued to promote myself and work.
“The good thing about it [my work] is it is social media so most of it is done online . . . . I can stay home and do most of it; I don’t have to be out and active as much. It is only those odd times I go to meetings, interact with clients or visit a site to take pictures, but like I said, that isn’t a big hassle. If you manage it [the condition] well, you can lead a normal life,” he said.
Greenidge is vice president of the Barbados Haemophilia Association, which was formed with an objective to share awareness of the disorder and to rally haemophiliacs together.
The association is also working to provide medication and care to haemophiliacs.
One of its main hurdles thus far is ignorance of the disorder. As a result of inaccurate information about the disease, rejection for jobs is commonplace since employers unjustly believe that people with the condition would be too much of a risk.
“Employers just need to be aware that haemophilia is a condition that is well manageable. If an employee comes to you and says, ‘I have this condition’, he didn’t just get up that morning and come to that realisation. He has been dealing with this his whole life. This isn’t a surprise to him, this isn’t anything new.
“He knows how to manage it, how to handle it. It is not a real disadvantage and most haemophiliacs know how to mould a situation so it works as it would for a normal person,” he said.
“If the employer is worried they would have more sickness, that I don’t believe because we are able to manage it. But if that is the case, every individual will do their work [sometimes giving more than 150 per cent] because they don’t want an excuse made for the haemophilia. They would rather not be defined by haemophilia but given credit as a person.”
Greenidge spoke of growing up at a time when very few people were aware of the condition and the ability of an individual to manage it properly. What this lack of awareness did was to perpetuate propaganda.
“When I was young I heard, ‘Do not get an unlucky blow, do not put yourself in danger’ and that was it. I did not care to hear anymore simply because it was negative,” Greenidge said.
“I was being alienated with the definition so I didn’t really want to know. I think largely, because of that, the information filtered down to me was scary stuff, which is all that really stuck in the minds of most people.
“So the positive that you could live a normal life with medication, like people overseas who you don’t even know have haemophilia, was not spread so there was no positive outlook [on] your life and your situation.”
It is for this reason that he hopes to counter much of the misinformation in society, as it relates to haemophiliacs, to assist other sufferers to cope better and be more comfortable.
“Everything will come to an end at some point but you have to fight ’til you get to the point you want to get to. So if you face rejection, keep persevering.”
Greenidge added: “Our organisation is aiming to build awareness so that rejection is not as common here. So that people can understand we can operate like a normal human being in life and get things done. From young we know we have pain but we can’t stop living because of it, we have to keep on living.
“I think most haemophiliacs would know perseverance and have persevered. We can’t give up.” (SDB Media)