“I believe my diagnosis initially affected my family more than myself because it did not begin to impact my life until my teenage years. As I grew older my loss of vision, and all the things that appeared to be contingent on it, left both my life and mental health in crisis. I was angry and hurt that I could no longer play basketball, go out at night or seemingly ‘be normal.’
Dealing with this loss has been, and often still is, a long and difficult journey, yet through it I have been able to challenge perceived limits on my ability to experience and enjoy life.
I have been involved with Fighting Blindness Canada for many years. Between the ages of 9 and 11, shortly after I was diagnosed, I started speaking at the annual Comic Vision event in Toronto, where I would share my experience as a child with vision loss to help raise money for FBC. For the past few years I have been a member of FBC’s Young Leaders program, which provides mentorship to youth who are experiencing vision loss.
FBC’s mission is important to me because it is both optimistic and realistic. I have found that the two are rarely used in conjunction with each other when responding to loss, yet FBC stresses the notion that a cure for sight loss is possible!”
“My diagnosis came as a shock since there is no history of eye disease in my family. It took a while to sort out the diagnosis and I remember feeling quite frightened of what my future would look like because there was so much uncertainty about the diagnosis and the course of the illness. As it turns out, the deterioration, limited to my central vision, has thankfully been quite slow.
I remain quite involved with physical activities such as running, cycling and cross-country skiing, which is vitally important to my sense of well-being. I have had to switch from reading books to listening to audio books, though. I would prefer to be able to read, but I have come to love audio books and am so grateful they are readily available. My wife has also had to make significant adjustments to her life due to my vision loss. Taking on all the driving was a huge burden for her, as she has never enjoyed driving and was quite terrified of highway driving. However, much to her surprise, she too has adapted.
I am always happy to help FBC whenever I can. For the past number of years, I’ve participated in Cycle for Sight as well as Comic Vision and just recently I helped at the Yong Leaders conference. Even if I never recover my full vision, it is so gratifying to support an organization like FBC. I know they will contribute profoundly to the lives of future generations affected by vision loss.
LORRAINE AND KARIN STIEFENHOFER
“When Mom was diagnosed with AMD in 1998, I had never heard of the disease and did not know that there are actually two forms of it. I was soon disheartened to learn that Mom had the more serious and aggressive form of the disease, wet AMD.
In the early years of her AMD, a laser was used to stop the leaking that had been detected on her right macula. Fortunately, that seemed to stabilize the situation for a while, and she didn’t need treatment again for a few years. However, about 5 years ago the vessels in both eyes began leaking and she started receiving drug injections. On the days she gets injections, Mom receives two needles directly into each eye. I honestly don’t know how I would sit still for even one needle—let alone four—and then repeat the process again and again, sometimes every month (when the leakage is bad).
When required, Mom will give herself a pep talk before walking in to her appointment. Somehow, she is always able to work up the courage she needs to get through the fear and nerves.
Without a doubt, Mom is a survivor with an indomitable spirit. She is the liveliest 85-year-old most people will ever meet. Thankfully, she has always taken excellent care of her health, and she raised her four kids to do the same. In fact, she started doing healthy things like Yoga back in the 1970s, long before it was considered “cool,” and she is a healthy example to her five grandchildren and one great grandchild!
2018 will mark the fourth time I’ll participate in Cycle for Sight Alberta. It’s a fun event and I love the fact that riders include people with eye diseases for which we are raising money and awareness. I support FBC’s efforts to promote education and awareness of serious eye diseases. It’s important for patients to know they aren’t alone and to help them get needed assistance and support. It’s vital for donors to understand the challenges faced by people living with these diseases.”
“Olivia showed signs of vision loss from a very young age. While putting her into bed when she was only 2 years old, we noticed she was unable to see the glow in the dark stars we had placed over her bed. We started doing little games to see if she could spot our hands in the dark and it was clear there was an issue, especially when we compared her night vision with that of her younger sister. At the age of 5, Olivia was diagnosed with early onset retinitis pigmentosa. As you can imagine, receiving a life-changing diagnosis for a rare disease that has no cure is devastating as a parent.
As we began to learn more about Olivia’s diagnosis, we found a connection with Fighting Blindness Canada, which we benefited from immediately. They gave us a sense of empowerment and the chance to become part of a community that is committed to restoring hope and sight. This puts power back in a parent’s hands, giving us the ability to do something, to take action. FBC offered us the chance to fundraise for research, to participate in events, to talk, to learn, to connect.
It took us many years, to be honest, to begin to truly deal with and to understand how RP would or could possibly impact our lives. Our links with the community of families affected by visual impairment has grown over the past 11 years, and it has been through the relationships with both FBC and with this community of friends, that we have learned how to talk openly with Olivia about her impairment, how to cope and how to move forward. It has taken her years to understand and learn to advocate for herself, but we continue to be so proud of her strength and determination in dealing with her diagnosis.
FBC gives us, and more importantly our daughter, hope.”