As a child, Sarju Persaud spent many of his days laid up in bed with various injuries which bled sometimes for weeks at a time. This saw him missing school for months at a time and even after it was established that he had a “bleeding problem” no diagnosis was made during those horrible childhood days.
It was only after several bouts of hospitalisation and undergoing 30 days of radiation for what later turned out to be a benign tumor caused by the extensive bleeding he suffered following a surgery that Persaud was diagnosed with the rare hereditary disease hemophilia.
“When a been small, if a like pull out a teeth it would tek like months to stop bleed. And when a been small a did get hit in me head; I did four surgeries,” was how Persaud described his childhood, pointing to his head as he spoke.
Today he spends most of his days laid up because the surgery he had some years ago caused so much damage from the extensive internal bleeding that he now has a surgical bag attached to collect fluid that leaks through an opening in his stomach.
But it is not all bad news. Persaud now has access to Factor VIII (eight) injection that controls the bleeding and he is scheduled to return to the surgical table where it is hoped that damage done can be corrected.
The injection is provided by the World Federation of Hemophilia (WFH) through the Guyana Hemophilia Society (GHS).
Hemophilia is an inherited bleeding disorder in which the blood does not clot properly. This causes spontaneous bleeding, and/or prolonged bleeding after an injury or surgery. People with hemophilia have low levels of specific clotting factors, which are proteins in the blood that help it to clot. Persons with low levels of Factor VIII have Hemophilia A, and those with low levels of Factor 1X have Hemophilia B.
The WFH says that people with hemophilia do not bleed any faster than normal, but they can bleed for a longer time. Their blood does not have enough clotting factor, a protein in blood that controls bleeding. It further states that people with severe hemophilia usually bleed frequently into their muscles or joints and may do so one to two times per week. The bleeding is often spontaneous, which means it happens for no obvious reason. On the other hand, people with moderate hemophilia bleed less frequently, about once a month. They may bleed for a long time after surgery, a bad injury, or dental work. They will rarely experience spontaneous bleeding. People with mild hemophilia usually bleed as a result of surgery or major injury. They do not bleed often and, in fact, some may never have a bleeding problem.
Hemophilia is quite rare; about 1 in 10,000 people are born with it. The WFH’s Annual Global Survey surmised that with Guyana’s population of approximately 755,000 persons, an average of 52 persons could be living with and suffering from hemophilia.
The GHS is extremely concerned that to date there are only 15 confirmed cases in Guyana.
Hit with a ball
Persaud shared that 11 years ago a ball hit him in the stomach and while he did not know it at the time he began bleeding internally and it developed into a hard lump that was painful. Doctors at Georgetown Public Hospital (GPH) ordered a CT scan and later told him that he had to undergo surgery.
“When they done do the surgery and suh around the area get back hard so they want know why it get hard,” he related. “They call me back and did several CT scans and they send me to do a biopsy and they said I have cancer… I went and do radiation for like 30 days and when I done do the radiation the doctor them say is not cancerous because if it was cancerous it woulda shrink a bit.”
It was at this point, following several other tests that Persaud was diagnosed with hemophilia and it was suggested that he seek medical assistance overseas. Eventually he was hospitalized in Trinidad and it was there that he first had the Factor VIII injection. But after about two months he was discharged and informed that there was not much else that could be done.
Back in Guyana he continued to be treated mostly by being given blood as his blood count was always low. It was through the GPH he got in contact with GHS and he began to access the Factor VIII injection.
“…I teking the Factor eight medication like four years now and I does got to take it every other day because I does bleed a lot…,” he said.
As he is now accessing the injection, Persaud said, he does not bleed as before and he has not had cause to be hospitalized. However, he has to deal with the surgical bag that collects blood and faeces. He noted that it is not a colostomy bag as he defecates on his own, but because of the internal bleeding an abscess was formed, burst and has been leaking since. He has had the bag for about four years.
He hopes that after the second surgery he will be able to have a relatively normal life.
“Due to my situation that I really can’t work and provide and so me partner leave; she find someone else and she getting on with she life,” he sadly said.
However, he sees his six-year-old son almost every day as they both live in Mon Repos, East Coast Demerara and he visits regularly.
Persaud is one of three brothers and while the other two also have symptoms of the condition theirs are not as severe as his. They have sisters who have not exhibited any symptoms and it is believed that their mother is a carrier of the illness even though she has had no known symptoms.
His aunts informed him that his grandmother died due to a bleeding problem but they never knew about hemophilia.
He believes that like his brothers, he does not have the severe form of hemophilia but because of the surgery he had 11 years ago resulting in the internal bleeding, he now has to deal with being at home and not being able to work and support himself. His left foot has also shrunk since the surgery and he now walks with a limp.
“I can’t even walk far because the blood is always low and I does get shortness of breath..” he said.
According to Persaud, if he had not found the GHS he might have died by now because his blood count would become so low and even though he was given blood he continued to bleed internally.
The injection, which he is accessing at GPH, is stored in the refrigerator and he administers at home with the assistance of a relative.
