Hereditary eye disease leaves patient with more expenses than hope

Nov 16, 2008 News

Guyana has been able to secure immense assistance from the Cuban Government in its effort to boost the delivery of health care, a development which has lent tremendous support to the eye care service offered here.
Among the eye diseases that have been effectively addressed as a result of this assistance is Retinitis Pigmentosa, which according to Minister within the Ministry of Health, Dr Bheri Ramsarran, is a disease that has for a number of years been neglected in Guyana.
So severe the disease can be, Dr Ramsarran said, that without proper treatment it could lead to eventual blindness, even in young people.
But failure to treat the disease could be very understandable, since it was relayed by the minister that some centres can charge a whopping Cdn$2,000 just to determine the presence of the disease in the eyes.
With assistance of the Cuban Government, complicated and expensive to treat diseases such as Retinitis Pigmentosa are being aptly eradicated.
Among those who are expected to get treatment for the disease in Cuba is 30-year-old Mohamed Shameer, of 355 Grove, East Bank Demerara.
He will be among the 75th batch of patients scheduled to travel to Cuba on December 2.
According to Shameer, he was born with the disease. He noted that at the time of his birth, no such diagnosis was made.

Mohamed Shameer and his daughter, Bibi Shaneeza Shameer

On Friday, Shameer related that it was not until he was about nine years old that medical officials discovered that he had the disease, which they claimed was hereditary.
He said that his teacher had observed that he was not able to see on the blackboard, and had recommended that his eyes be examined.
“She was the one that discovered that I was not seeing well. I use to think that everybody use to see the way I did. I actual thought it was normal…”
However, following several doctors’ examinations, Shameer said, it was deduced that he was myopic or short sighted.
The young man pointed out that for years he suffered as a result, and was not able to hold down a job.
“People would see me walking down the road and believe ‘oh, all is well with him; he can work’…but what they don’t understand is that when I walk into a strange place that is dimly lit, or when the place gets dark, I become totally blind,” Shameer revealed.
Though stricken with the problem, which was undiagnosed at the time, the man fell in love and married his true love, a union which has since produced two children.
Shameer said that, were it not for his parents, there was no way he could have had his own family. They have been financially supportive, he said.
“I don’t have many relatives and friends who want to be around me, because they know I always need something…I have nothing to offer, and my parents have been there through it all with me,” Shameer related.
But although his parents and wife make life as manageable as possible, Shameer’s problem would intensify in the year 2004.
Medical experts found that the young man’s retina had become detached, thus making it almost impossible for him to see in any circumstance.
A surgery was necessary to fix that problem, a procedure which was undertaken in Barbados at a cost of close to US$12,000.
And though the retina was repaired, his vision did not improve to a satisfactory level, Shameer informed.
It was not until the year 2006 that Shameer’s sister would learn of Mission Miracle during a visit to the Georgetown Public Hospital. She advised him to get his eyes screened by the Cuban experts, a decision he did not hesitate to make.
Shameer was a part of a batch that travelled to Cuba in 2007. However, no operation was conducted on him. In fact, the examination of his eyes was not completed, and he was told to return to Cuba in six months’ time.
He eventually returned, and would, for the first time, learn that there were four problems with his eyes.
Shameer said that after extensive investigations, the Cuban medical experts were able to find that he not only had myopia, but still had retinal detachment, cataract and retinosis pigmentosa. He had surgery on both of his eyes earlier this year.
However, he has since lost vision in his left eye, but has been given the assurance by the medical professionals that his eye could still be rectified.
Shameer said that the surgery which was undertaken was, however, not intended to fix his vision but, rather, reverse the progress of blindness in his eyes.
They had to do the surgery to awaken the nerves. If they had not done it, I would be losing my sight day by day, and could have even been blind by now,” Shameer said.
He related that the medical professionals informed him that he would have to return to Cuba every six months for the next 10 years to receive treatment for his eyes.
He is concerned about getting the assistance to make the needed trips to Cuba every year.
Shameer said that, in order to ensure that his children do not suffer the way he did, he has already started having them examined, adding that his eldest daughter, seven-year-old Bibi Shaneeza Shameer, has since been diagnosed with myopia, too.
He said that his daughter was also examined by the Cuban doctors, who have since urged him to ensure that she receives all the necessary vitamins and strictly wear spectacles that were prescribed for her, in order to be cured of the problem.
However, one of the challenges to preserving his daughter’s eye sight is rooted in the fact that he has to find funds to replace her spectacles every six months, Shameer said.