Even Giants Bleed

Ray and his wife Desriel enjoying the customs of Japan on a trip there. (Facebook image)

By Kimberley Cummins

Judging by the outward appearance alone, Ray Greenidge is no different than many other young Barbadian men. 

He is articulate, educated, ambitious, has a great personality, is fun loving and sometimes believes he is funnier than he really is.

However, what separates Ray from others 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 (WFH), haemophilia is a rare bleeding disorder in which the body lacks a protein known as 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 (which is missing factor 9).

The different levels of haemophilia are: mild, moderate, and severe depending on how much factor you have.  Persons with a mild case of the condition sometimes are not aware they have it. However, severe cases, also referred to as “bleeders” are almost certainly picked up when the sufferer are younger. The condition is typically a hereditary disease and is not contagious. The vast majority of sufferers are males; in very rare cases it also affects girls. The Barbados Haemophilia Association (BHA) reports that there are only an estimated 50 Barbadians known to suffer from the condition.

In Ray's case he was diagnosed with haemophilia when he was just three years old.

Though he was too young to remember all the details, he recounted that his diagnosis came following what was then believed to be a straight forward burst lip. Luckily for him, his mother quickly realised there was nothing quite simple about this 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 explained.

Haemophiliacs usually have joints issues, and Ray too experienced this, which prevented him from playing some sports. During his school life he received an injury to the knee and this was followed by bleeds in his ankle. It reached the point where through his primary school life and the majority of secondary school at both The St Michael School and later the Combermere School where he completed his sixth form education, Ray used crutches to get around. 

In class one, he had two crutches but by the time he reached 18 he was down to using one. Now, he can get around fairly good but uses a cane sometimes for added support.

Ray said that coping with the condition hasn’t been the easiest thing in the world to do but he is never daunted.

He said: “I try to keep a positive mind set, when a door or window closes another one opens. The bleeding inside of the joints is all manageable with the correct medication – so I try to manage.”

Ray (left) with president of the BHA Erica Worrell during a conference. (Internet image)

In terms of work, Ray who now uses a cane sometimes for added support to get around, has to avoid anything that is labour intensive but he stressed that in spite of this, he and others afflicted with the condition are very capable and employable.

This was clearly evident when Ray completed his degree in Management and Economy at the Cave Hill campus of the University of the West Indies, he went on to forge a successful career as a social media marketer for a number of companies that apparently liked his work, before he decided to leave and establish a company in the same sphere.

“The good thing about it [my work] is it is social media so most of it is done online. . . . So 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.

The 30-year-old is a past vice-president of the BHA which was formed with an objective to share awareness of the disorder and to rally haemophiliacs together. The association is also working to provide the appropriate medication and care to haemophiliacs.

But 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 common placed in this community since employers unjustly believe they are inadequate or 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 got up that morning and came 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.

Ray (right) said he loves sharing facts on haemophilia so as to counter the existing misinformation. (Internet image)

"Countering the misinformation"

“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 more simply because it was negative. 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 they have haemophilia, was not spread thereby there was no positive outlook and your life and your situation,” he said.

It is for this reason that he hoped by countering much of the misinformation in society about haemophiliacs with more facts, it would assist other sufferers to cope better and be more comfortable in doing so.

“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. 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 this, we have to keep on living. I think most haemophiliacs would know perseverance and have persevered. We can’t give up,” Ray advised haemophiliacs.