Erin’s Unwavering Determination, Then and Now
Diagnosed with retinitis pigmentosa at a very young age, growing up, Erin never let her progressive vision loss stop her from keeping up with her friends and siblings. Throughout the 1990s, Erin was featured in several Foundation Fighting Blindness campaigns to raise funds for retinal research. Today, 34-year-old Erin is resilient as ever, still hopeful research will one day find her a cure.
Erin Czadzeck (previously Scala) was diagnosed with retinitis pigmentosa (RP) at the age of four, after her parents, John and Barbara, noticed that she was tripping around the house and grabbing onto them when it was dark. John recalls the ophthalmologist immediately recognizing that Erin had RP, but there wasn’t any genetic testing readily available then to confirm the diagnosis.
From there, Erin’s parents started to research resources and found the Foundation Fighting Blindness (then known as the National Retinitis Pigmentosa Foundation) in 1990. Over the years, the Scala family attended many VISIONS conferences, ran an annual local golf tournament, and started a Syracuse (NY) chapter, in which John was the president. All their efforts were to raise funds for research to find Erin and others with RP, treatments and cures.
As a child, Erin was tenacious and known for her spunk. She loved to play soccer and ride her bike, never letting her visual impairments stop her from keeping up with her friends and siblings. Because of her drive at such a young age, the Foundation featured Erin in several fundraising campaigns throughout the 1990s. Erin was featured with her older brother, Matt, as well.
Today, Erin is resilient as ever. She’s now 34 years old, married, and has a one-year-old son. Erin earned her bachelor's degree in public justice and currently works as an employment specialist at a residential facility for youth with sexual, emotional, or behavioral challenges. Erin works with these youth to teach them job-related and life skills, often using assistive technology like JAWS on her laptop or voice over on her iPad and iPhone. Erin also uses a white cane for independent mobility.
“I’m constantly teaching myself and learning about new technology because I hate asking for help,” says Erin. “I know there’s always a way I can accomplish a task, and the result will always be the same; I just may go about it differently.”
Erin’s vision loss has continued to progress over the years, as now she can only see light and dark and cannot decipher faces or color. But this progressive vision loss over time has taught Erin to appreciate what she has and to continue to persevere regardless.
“There’s nothing I can do about my vision right now, so I try just to stay positive and think about all the good things that I do have,” says Erin. “I can still read a Braille book to my son in the dark or change his diaper at night, so I always try to remember that I can still do what I need to.”
A way Erin continues to thrive is by keeping active outdoors. Erin loves to snowboard, rollerblade, hike, and compete in triathlons and Tough Mudders with a guide, using a tether rope for swimming and running, and a tandem bike.
“Some people say I’m crazy, but it’s so fun for me, and I’m just living life and enjoying it,” says Erin. “I can still swim, bike, and run; I just need someone with me. And it’s way more fun to do it with someone else than by yourself anyway.”
With Erin’s busy schedule, she continues to stay up to date with RP research updates from the Foundation, social media support groups, and podcasts.
“Research is exploding now,” says Erin. “Every little bit of research leads to more, so I’m very hopeful. And the awareness about retinal diseases has grown over the years and is reaching more than ever before.”
She recently had genetic testing to find her mutated genes before having her first child.
“The research has gone from mice to men over the years,” says Erin’s dad, John. “Way back when we first started getting involved with the Foundation, all you heard about was research on mice, but now they’re actually working on humans. We’ve even met people that have participated in clinical trials, and that’s so encouraging.”
As independent as Erin is now, she’s happy to have her family and friends to rely on, if needed. Her older brother, Matt, who is now 36, is always there for Erin when she needs help with anything.
“Erin’s diagnosis has made me realize, on more than one occasion, that I shouldn't take anything for granted,” says Matt. “It's interesting to think about how Erin manages to conquer each day without her sight. It’s an understatement to say she’s inspirational to me.”
Erin strives to inspire many more and to help raise awareness that blindness doesn’t affect everyone in the same way.
“You can still live a positive, uplifting, and enlightening life with vision loss,” says Erin. “Life would be boring for me if I didn’t have RP, honestly. My vision loss is just another obstacle to overcome, and it’s just a different way to live.”
Erin's family has learned a lot about blindness over the years, which they want to share with other families of those newly diagnosed with a retinal disease at a young age.
“As a parent, it’s important not to shelter them,” says Erin’s dad, John. “You don’t want your child to grow up thinking they’re different. They can still do anything they put their mind to.”
Erin’s brother Matt lives by the “golden rule” to treat others the way you want to be treated.
“That would be the advice I would give anybody growing up with a sibling with RP,” says Matt. “Go above and beyond to make your loved ones, especially if they are living with a disability, feel like they are wanted and do everything you can to help.”
If you'd like to continue following Erin's journey, specifically as a visually impaired mother, check out her blog here.