Written by Shini Saravanamuthu, as narrated by Kara Meyer Robinson
When I found out I had retinitis pigmentosa (RP), a type of hereditary retinal atrophy, I was shocked.
No one in my family has vision problems. I was having some trouble seeing, but I thought it was because of the bad lighting or simply because eyes weren’t supposed to see well in the dark.
After my diagnosis, my struggle to see at night made sense.
I found out I had retinitis pigmentosa after I switched to a new ophthalmologist. I picked it up on a routine check up. He took a picture of his retina and saw pigment deposits.
The ophthalmologist referred me to an ophthalmologist immediately. Several visual field tests were performed and retinal examinations were performed. My doctor asked questions about my vision and when I noticed my symptoms. They also asked about my family history.
I have a South Asian background. My family is from a country with no medical records and they have not spoken openly about illnesses or disabilities. This made it difficult to know if anyone in my family had eye diseases or blindness.
I only really got the idea after I took a genetic test. I found out that both of my parents were pregnant. They told me the gene had mutated, and that’s how I got RP. The genetic mutation has yet to be identified, but I figured I wouldn’t pass it on to my children, which was a relief.
I saw two different ophthalmologists before I got a final diagnosis. I was told that I would need a specialist to follow up on my condition and keep track of the condition. My doctors said that over time, I would lose more vision. They told me to be patient, take vitamins, and hope for the best. They also said there is no cure.
What will my future be like?
Finding out that I have RP was heartbreaking and terrifying. My main concern was how quickly the vision loss would occur. I wanted to know if there were any remedies to reverse this. I also worry about passing it on to my future children. I had a lot of questions. Will I be able to continue with my normal life? What will happen to my career? What would dating look like?
That was in 2011. But it’s a completely different ball game now. There are a lot of studies and clinical trials being done and there is more awareness about hereditary retinal atrophy. There is a lot of hope now.
The science and technology side is very exciting. Even if not in my lifetime, I am quite confident that in the next few generations, people who have been diagnosed will not have to hear the horrible words, “Sorry, there is no cure for RP.”
Living with retinal dystrophy
At the age of 31, I am now legally blind and a person with a disability. I suffer from severe night blindness and limited peripheral vision.
In 2020 I discovered a hole in my right eye which caused more vision problems. My doctors were able to patch the hole using the amniotic membrane. Vision has not returned, but the risk of retinal detachment is gone. I hope that the lost vision from the hole will slowly return.
Now I just take it day by day. I perform best during the day and in well-lit locations. My biggest struggle is at night or in low light, where I can’t see at all. I have a hard time climbing stairs, so I take my time, especially when I’m going down any stairs in public.
I work from memory a lot. Memory and lamps are my best friends.
So are my friends and family. They are a great support. They help guide me in the dark and bring me places when public transportation is not an option. I no longer have a driver’s license, so this is a huge help.
When I go out, I usually go with my sister or friends. I’ll stick to places I’ve already been to and where I feel comfortable using public transportation myself. I plan to learn how to use a white cane, a device for mobility, to regain my independence and confidence in dark places.
It is getting better with time. It took me about 4 years to embrace this new journey, with the help of my therapist and genetic counselor.
Joining online support groups, such as those on Facebook, and following people with vision loss on social media has been a huge help. I love the community I’ve been introduced to all over the world. Our visually impaired community is very strong and resilient. It’s very inspiring.
It may seem like everything is going wrong when you first get the diagnosis, but over time you can learn to accept the journey. This diagnosis led me into a whole new community I wasn’t familiar with, and it opened my eyes, without pun intended, to a lot.
I am grateful for my journey and can’t wait to see how much the world of vision research will grow and innovate in the years to come. My advice to others is to have faith and take it day by day.