One in 3,500 to one in 4,000 Canadians are affected by retinitis pigmentosa, a group of incurable diseases that can lead to blindness after several decades.
In this video, Calgary mom Jen Abbott speaks with Calgary Journal reporter Tammie Samuel about the realities of parenting with retinitis pigmentosa.
Tammie Samuel: Could you talk a little bit about your eye condition and when you were diagnosed?
Jen Abbott: The condition that I have is under the umbrella of retinitis pigmentosa. I’m not exactly sure yet what the exact gene mutation cause is for this. We’re still awaiting test results. I was diagnosed in 2015 in and around there. It’s been a part of my life probably before then up until now. In recent years, with having kids, it’s just kind of progressed.
The condition affects your peripheral vision loss. Night blindness is kind of the first sign of it, because you lose that sensitivity to light and dark. For me it came with that and this loss of the periphery, kind of like closing in. It was starting to affect everything, like tripping on stairs or down stairs or driving or driving at night or doing activities that I used to do, like playing soccer. I couldn’t see the whole field or the ball or things like that. It slowly affects your peripheral vision. There is no actual cure for this condition currently. I know that there is research about treatment to hopefully halt and stop the progression, but at this point it’s all in trial. It’s kind of like looking at the world through a tunnel.
What do you remember thinking and feeling in those first few weeks when you started losing a good amount of your vision and you were having those issues?
It took a while to get a diagnosis. I started with my optometrist because I knew something was off and I did some tests called the visual field test. If you’ve ever taken a driving test, they have, you look through this machine at this little dot in the center and then little dots flashed around and you have to press the button every time the light flashes and they’ll see how much of your field you can see. They sent me for this test and I felt really dumb doing this test because the technician was kind of like:
“well is it working”?
Like, can you see anything?
Is this happening?”
I couldn’t see any of the flashes, so we restarted it. Sometimes I could see the flashes, sometimes I wasn’t sure. So the results came back inconclusive. So in the beginning it was really frustrating because test results weren’t revealing anything.
I kept having to repeat this test. Finally I got referred to an ophthalmologist. I had to repeat the test again, go through all of their testing. They couldn’t figure out what was going on. So finally I got a referral to a retina specialist who with their imaging and their testing was able to give me a diagnosis. But initially that diagnosis was kind of heartbreaking because everything that I had read about it leading up to this told me that if it was this condition there was no cure and the end result is potentially blindness.
That is a really difficult thing to go through, especially as a mom, I’d imagine. I know that you have two boys, how old are they?
My boys are currently five and then three in like two days. At the time of the diagnosis though, I was not a parent yet.
What kind of challenges have you faced now that you’re a parent and you have retinitis?
It affects everything. As of September last year in 2021, my vision loss had progressed. I had seen my specialist. He’d given me the suggestion to stop driving and at that time everything had declined in the past year. I had to make the decision to stop driving, which affects little kids, like getting them to and from childcare or to activities or going grocery shopping and having a vehicle to carry your groceries home in. And just even the locations where we choose to send them to school or childcare because it needs to be accessible to me by walking or by public transit.
It really affects the decisions that I make day to day to go somewhere or not go somewhere with them. I’m limited on the days that they’re not in childcare where I can take them to these grand play centres or to the library or to the swimming pool because I don’t have access to get there without either having somebody else take us or paying for transportation. Taking an Uber with kids that need to have car seats is really challenging too, because what do you do with the car seats once you get dropped off?
Is there an instance that you don’t mind sharing that made you really reconcile with the fact that your experience raising children differs from moms who are fully sighted?
I don’t know if there’s any specific experience. I think it’s multitude of things like [we] can’t just plan a playdate and meet somebody halfway because we have friends on the other side of the city with similar aged children, or I can’t just say, “Hey, it’s a really nice day, let’s go to the zoo today.” Or, it’s a lot of these experiences that you want to give your kids that are much more complex to actually execute such taking them to like swimming lessons or things that I know that I did as a kid and was just part of growing up. There’s a lot of logistics involved in everything that we do as a family now.
With all these logistics, have your boys kind of learned that mom’s eyes don’t work properly and they have to be more patient with you?
I think especially my oldest is starting to understand it more when, for example, he’ll ask if they can go to a specific park and that park is not within walking distance for us. And I have to say, “We can’t go there today. We can go to the ones that we can walk to and maybe we’ll have time on the weekend to go to that specific park.” Things like that. Even within our own home, my oldest who’s five is learning that if things are left out in the walking path on the floor that I will trip on them. Or if toys are left out, I will trip on them. Or if cupboards are left open, I will probably run into them. So, he’s learning, but he’s also five. My youngest doesn’t quite get it at this point, but I’m sure that he will eventually.
Could you shed some light on this experience from the perspective of a mom who wishes to see her children grow?
I think that’s the scariest part about this. I’ll probably get emotional about it. The hardest part is I want to be able to see them grow up and have their own life experiences and be able to travel and be able to go places as a family and explore. But, there’s potential that I might not be able to see those things down the road. But right now, with the research that’s out there, there is a potential chance that once I have genetic testing results, it could put me into a group that is eligible for clinical trials for stem cell research and that would potentially halt the progression. So there is hope on that end, but we also just have to be in it right now with the vision that I have and do what I can with what I have now and then adapt as things change.
What other supports have helped you get through or come to terms with the fact that your vision is deteriorating?
One of the things that I did reach out to was CNIB, which is the Canadian National Institute for the Blind. So, they have a program where you have an identification card for your disability. So this card gives me free transit access. It also gives not necessarily me, but my companion or support person, whoever that might be at the time, usually free access or discounted access to places.
So for example, we have a zoo membership, so the membership card has my name, but I have a special sticker on it that says that I need a support person with me. So that would be my husband and we don’t pay for him to come in. We have used it for flights. So he is my support person on the flight. So his flight rate is discounted as a support person.
Through CNIB I have a mobility cane now. So that is a long white cane with the ball on the end of it that I will walk with, especially in environments that are very busy or that I’m not familiar with. It will notify me of any changes in the environment. So if there’s a ramp or a step or a curb or a sign or something in front of me, the ball will hit that prior to me hitting it. But it lets other people know that I might not see them and that they need to kind of move out of my way. So it has its benefits, but it’s also somewhat of a burden to use sometimes.
Retinitis is an inherited disease. How, if at all, has this caused you to worry for your children’s vision, if you don’t mind?
There’s a few ways that it can be inherited. It can be passed down through the generations where in every generation the disease shows up. There’s another where it’s a recessive gene where you have to have the mother and the father both have to have the recessive option and it needs to be turned on and activated in that offspring that they create together. Then there’s a third version and I don’t know exactly how to describe it, but it’s almost like it’s more of a random mutation and there is no link or cause to it. So it could go any way. There’s kind of a 50 per cent chance that our children could have it. At this point we don’t know, partially because I do not have the testing results back yet. And partially because it’s kind of early for this disease to pop up for them. It could be later in childhood or, or later into adulthood.
What else do you think could be done in terms of building awareness for people like you who face, growing a family, raising kids while living with retinitis?
What could be done? I think that accessibility is the biggest thing. If there was a service that could drive me and my kids safely from our home to an activity where I didn’t have to haul car seats around or something like that outside of what is accessible to our bus system, that would be amazing. It would open up so many opportunities for us. There are services that I need to look into and probably apply for that would take me to appointments that again, are accessible to me on the transit system. But it would take like three different bus transfers and three hours to get to a singular appointment. So I think giving people with low vision or vision loss more opportunities for access to things without the cost because it’s not inexpensive to pay for transportation like a taxi or an Uber to and from places.
Especially like I work now and I’m self-employed, but when you’re on maternity leave with a baby and you have to get to doctor’s appointments or you want to go to playgroup with your kids, but you can’t get them there because there’s not an option for transit, then you’re kind of fueling the fire of other postpartum issues. So as a parent it is very isolating. Early parenthood is already very isolating. So on top of this, I think it’s a bigger challenge with that isolation.
Editor’s Note: This interview was conducted in Winter 2022 and has been edited for length and clarity. For citation, please check against the video.