Recently Aditya Jyot Eye hospital
organised a unique symposium on one of the most enigmatic problems in ophthalmology,
Retinitis Pigmentosa (RP).
Patients and relatives of patients who attended the symposium went home with a clear picture about RP and the implications of living with RP. The symposium was unique because unlike others, the speakers in this forum were patients of RP and retinal detachment who gave the house a fresh perspective of living with and overcoming their disability. Ms Nidhi Goyal who was diagnosed with RP during her college days spoke extensively of her journey so far. She mentioned the obstacles she faced during education as well as socially. She also described the new technical devices that she uses in her academic pursuits (she is currently studying at the London School OF Economics).
Patients and relatives of patients who attended the symposium went home with a clear picture about RP and the implications of living with RP. The symposium was unique because unlike others, the speakers in this forum were patients of RP and retinal detachment who gave the house a fresh perspective of living with and overcoming their disability. Ms Nidhi Goyal who was diagnosed with RP during her college days spoke extensively of her journey so far. She mentioned the obstacles she faced during education as well as socially. She also described the new technical devices that she uses in her academic pursuits (she is currently studying at the London School OF Economics).
Ms Sushmita Bubna who had a retinal detachment in both eyes and subsequent blindness also gave the house her side of the story. She currently runs a computer training institute for people with low vision, and has made a huge difference to a number of visually handicapped individuals. This was followed by an interactive session where patients and relatives of patients could ask questions to the speakers and get their doubts cleared. Various questions ranging from legal rights, educational concessions, travelling concessions, driving rules, matrimony, support groups were discussed and deliberated upon. All the speakers were very inspiring , and mentioned the will and support of their
families in encouraging them with their
pursuits.
A very insightful talk on ocular genetics and gene therapy for eye problems was given by Dr. Kumarmanickavel , Director of Research at Aditya Jyot eye hospital. Queries regarding gene therapy, ocular prosthesis (ARGUS 2) were discussed and answered.
Dr Chinmay Nakhwa , Vitreo retinal consultant at Aditya Jyot Eye Hospital, who organised the symposium was happy too.
"People with retinitis pigmentosa and other genetic retinal disorders are longing for a medical cure to their condition. Although medical science has made huge strides in genetic research for the treatment of eye disorders, it still has a long way to go in terms of clinical therapy. Patients with RP who have near normal vision in early childhood, gradually start losing vision in the second and third decade of life.This is the time when they have completed their education , marriage and are probably setting down with their family lives. Diagnosis of a genetic eye disease at this age causes a great amount of emotional stress and frustrations for the family.In such a scenario, interactions with other individuals who have overcome similar problems and getting practical helpful tips for everyday living is really encouraging"
The participants and the speakers were very appreciative of the initiative and wanted this program to be held on a regular basis. Individuals who want any information regarding the same can contact AJEH.
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