By Shaini Saravanamuthu, told to Kara Mayer Robinson
When I found out I had retinitis pigmentosa (RP), a type of inherited retinal dystrophy, I was shocked.
No one in my family has vision problems. I had vision problems, but I thought it was due to poor lighting or simply because the eyes weren’t made to see well in the dark.
After my diagnosis, my struggle to see at night took on meaning.
I discovered that I had retinitis pigmentosa after changing optometrists. He caught it during a routine check. He had taken a picture of my retina and seen pigment deposits.
My optometrist immediately referred me to an ophthalmologist. I did several visual field tests and had scans of my retina. My doctor asked me about my vision and when I noticed symptoms. They also asked about my family background.
I have a South Asian background. My family comes from a country where they didn’t have medical records and didn’t talk openly about illnesses or disabilities. So it was difficult to know if anyone in my family suffered from eye diseases or vision loss.
I only really had an idea after I had genetic tests. I found out that both my parents were carriers. They told me a gene had mutated, and that’s how I got RP. My genetic mutation has still not been identified, but I found out that I would not pass it on to my children, which is a relief.
I saw two different ophthalmologists before I got the final diagnosis. I was told that I would need a specialist to follow me and monitor 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 was no cure.
What will my future look like?
Finding out that I had RP was heartbreaking and terrifying. My main concern was how quickly my vision loss would occur. I wanted to know if there were any treatments to reverse it. I was also afraid of passing it on to my future children. I had lots of questions. Could I continue my normal life? What will happen to my career? What will the meetings look like?
That was 2011. But it’s a whole different ballgame now. There are so many more studies and clinical trials going on and there is more awareness of hereditary retinal dystrophy. There is much more hope now.
The science and technology side is very exciting. Even though it’s not in my lifetime, I’m pretty confident that in future generations, those diagnosed won’t have to hear the awful words, “Sorry, there’s no cure for RP.”
Living with retinal dystrophy
At 31, I am now legally blind and a disabled person. I have severe night blindness and limited peripheral vision.
In 2020 I discovered a hole in my right eye which created more vision problems. My doctors were able to seal the hole with an amniotic membrane. Vision has not returned, but the risk of retinal detachment has disappeared. I hope the lost vision of the hole will slowly come back.
Now I take it day by day. I do best during the day and in well-lit places. My biggest difficulty is at night or in low light conditions, where I can’t see at all. I have trouble with stairs, so I take my time, especially when going down stairs in public places.
I work on my memory a lot. Memory and flashlights are my best friends.
My friends and family too. They are a huge support. They help guide me in the dark and bring me places where public transport is not an option. I don’t have a driver’s license anymore, so that’s a big help.
When I go out, I usually go out with my sister or friends. I’ll stick to places I’ve been before and where I’m comfortable using public transportation on my own. I plan to learn how to use a white cane, which is a mobility device, to regain my independence and confidence in the dark.
A brighter prospect
It gets 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, like those on Facebook, and following people on social media who are thriving with vision loss has been a huge help. I love the community that I have come to know around the world. Our visually impaired community is so strong and resilient. It’s very inspiring.
It may seem like everything is wrong when you first get diagnosed, but over time you can learn to embrace the journey. This diagnosis led me to a whole new community that I was unaware of, and it opened my eyes, no pun intended, to so many things.
I am grateful for my journey and look forward to seeing how 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.