By Shaini Saravanamuthu, as told to Kara Mayer Robinson
When I discovered that I have retinitis pigmentosa (RP), a form of hereditary retinal dystrophy, I was shocked.
No one in my family has vision problems. I was having some problems with my vision, but I thought it was due to poor lighting or simply because eyes were not meant to see well in the dark.
After my diagnosis, my struggle to see at night made sense.
My diagnosis
I discovered I had retinitis pigmentosa after switching to a new optometrist. He discovered it during a routine check-up. He had taken a picture of my retina and saw pigment deposits.
My optometrist immediately referred me to an ophthalmologist. I took several visual field tests and had scans of my retina. My doctor asked questions about my vision and when I noticed symptoms. They also asked about my family history.
I have a South Asian background. My family comes from a country where they had no medical records and did not openly talk about diseases or disabilities. This made it difficult to know if anyone in my family suffered from eye disease or vision loss.
I didn’t really get an idea until I had genetic testing. I found out that both my parents were carriers. They told me a gene had mutated, and that’s how I got RP. My gene mutation still hasn’t been identified, but I have found out that I won’t pass it on to my children, which is a relief.
Before I received the final diagnosis, I saw two different ophthalmologists. I was told I needed a specialist to monitor me and monitor the condition. My doctors said that as time went on, I would lose more and 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 I had RP was heartbreaking and terrifying. My biggest concern was how quickly my vision loss would occur. I wanted to know if there were treatments to reverse it. I also worried about passing it on to my future children. I had a lot of questions. Would I be able to continue my normal life? What will happen to my career? What will dating be like?
That was in 2011. But now it’s a completely different story. There are so many more studies and clinical trials being done and more awareness about hereditary retinal dystrophy. There is much more hope now.
The scientific and technological side of it is very exciting. Even if not in my lifetime, I’m pretty sure that in the next few generations people who are diagnosed won’t have to hear the awful words, “Sorry, there’s no treatment for RP.”
Living with retinal dystrophy
At the age of 31, I am now legally blind and a person with a disability. I have severe night blindness and limited peripheral vision.
In 2020 I discovered a hole in my right eye that caused more vision problems. My doctors were able to repair the hole using an amniotic membrane. Vision has not returned, but the risk of retinal detachment has disappeared. I hope the lost vision from the hole slowly returns.
Now I just take it day by day. I do better during the day and in well-lit places. My biggest struggle is at night or in low light where I can’t see anything at all. I have trouble with stairs, so I take my time, especially when descending stairs in public places.
I work a lot on my memory. Memory and flashlights are my best friends.
This also applies to my friends and family. They are a huge support. They help me in the dark and take me to places where public transport is not an option. I no longer have a driver’s license, so it helps a lot.
When I go out, I usually go with my sister or friends. I stick to places I’ve already been and where I’m comfortable using public transport. I plan to learn how to use a white cane, a mobility aid, to regain my independence and confidence in dark environments.
A brighter prospect
It gets better with time. It took me about four years to embrace this new journey, with the help of my therapist and my genetic counselor.
Joining online support groups, such as those on Facebook, and following people on social media who are experiencing vision loss have been a great help. I love the community I have met around the world. Our visually impaired community is so strong and resilient. It’s very inspiring.
It may seem like everything is going wrong when you first get a diagnosis, 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 has opened my eyes, no pun intended, to so much.
I am grateful for my journey and can’t wait to see how much more the world of vision research will grow and innovate in the coming years. My advice to others is to have faith and take it day by day.