By Lakhram Bhagirat
“I was scared because I didn’t know what is happening and what will happen. When they told me that I may lose my sight, I was depressed and I was about seven years old at that time. Just in Grade Two and I was shame because I didn’t want my friends to laugh at me…” the now 17-year-old Anjalie Sookra tells me.
Anjalie was diagnosed with Stargardt’s disease after her parents discovered she had problems with her vision.
Stargardt disease is the most common form of inherited juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula. The macula is responsible for sharp central vision — for tasks like reading, watching television, and looking at faces.
According to experts, visual awareness may decrease slowly at first, accelerate, and then level off. Stargardt disease is usually inherited as an autosomal recessive trait. It is inherited when both parents, called carriers, have one gene for the disease paired with one normal gene. There is currently no treatment available for the disease.
Now that we have a fair idea of Analia’s condition, let us get to know her and how she overcame and continues to overcome obstacles in her everyday life. She hails from the East Berbice village of Tain and is the first child of her parents Pradeep and Mohini Sookra.
She explains that that her childhood was one that was “normal” with lots of fun and friends but she always knew that something was wrong with her sight.
“While growing up and playing with my friends and so on, I always know that there is something with my eyes because I would always have to hold the book close to my eyes and sit in front of the class. But then at that age I thought it was all normal because but after I went to the doctor I know I was different,” she explained.
Anjalie attended Tain Primary and while there, she said the challenges in in gaining a proper education were plenty. She would always have to sit in front of the class as well as had a lot of difficulties reading, hence resulting in her not being able to perform well academically.
“I was an average student in school because of my sight. I know I had the potential to do better but I am satisfied with my performance.”
After completing the National Grade Six Assessment, Anjalie gained a place at Berbice High School and started a new chapter of her life. Adjusting to the pressures of secondary school as well as growing up was one she took in stride. She explained that while she is unaware of any teasing, she made some close friends.
“I made some very good friends and they helped me with my studying as school work. They never treated me any different and I am happy for that.”
Anjalie sat this year’s Caribbean Secondary Education Certificate examination and gained Grade One to Three passes in nine subjects. When I asked her how she was able to accomplish this, Anjalie told me that it was with extremely hard work as well as determination.
“I used to study hard and make sure that I understand everything that I was taught. I also had my friends and parents who helped me a lot. I am glad with the subjects that I passed and am now able to follow my dreams,” Anjalie said.
Now Anjalie is a student at the University of Guyana’s Tain Campus pursuing her studies in social work. She explains that she chose that field because she wants to help people who are in similar positions as she is. She says her condition not only limits her learning capabilities but her mobility as well.
“I wish I can drive so it would ease the burden on my parents. They don’t want me to go anywhere on my own and they would take me everywhere. I wish that there would be a little more independence.” (Times Sunday Magazine)
