Kathleen Kennelly-Gorman was just 14 when the reality of an inherited genetic eye disorder sunk in. Stargardt disease meant she lost her central vision and had limited peripheral vision. Her dad has it – as do three of her sisters.

“For me it’s almost like there’s a veil over my eyes. Everything is fuzzy,” she explains. “I have to manoeuvre my head and eyes to focus on things to get the max out of my peripheral vision as I don’t have central vision. I’d have to bring things right up to me, I’d be like Mr Magoo.”

When they got the diagnosis while living in Buttevant, North County Cork, her parents went into denial. “It was a deep, dark secret in the family. We weren’t allowed to tell anybody. Years ago I thought they were mean. But it made us very, very independent in the end. Instead of mollycoddling us, they made us very strong.”

When Kathleen was told she could not do her Leaving Cert due to sight loss, she refused to accept that she could not continue her education.

She emigrated stateside where supports for sight loss were far more advanced. She completed the American High School Diploma. She went to college to train as a cosmetologist or beautician and eventually qualified as a massage therapist.

“I did a very extensive course outside San Francisco which covered nutrition, anatomy, psychology and wellbeing. I got readers, extra time for exams. It was the ‘80s and it was just too hard to study here.”

She moved to her then-husband’s native Portumna in 2001 and has never left.

“I’d be a fool to leave Portumna. I’m nearly stuck in everything. I do line dancing, I’m in Tidy Towns, the Active Retirement, the ICA. I’m a volunteer facilitator with the NCBI [National Council for the Blind of Ireland] Local Advocacy Network.”

Kathleen doesn’t have a guide dog and only uses a cane if she goes to Galway City or an unfamiliar town. She knows her way around Portumna and walks everywhere.

“It’s very easy to get around, very accessible. Everybody knows me. I do my own shopping although I often come home with the wrong item. My son mostly drops me to the supermarket and brings me home. Sometimes if friends are going, they’ll ask if I fancy coming along. I’m mad for road.”

In her spare time, she does tandem cycling and goes hiking with the Galway Visually Impaired Activities club set up in 2006. They usually cycle on Sundays in Connemara and go walking on Saturdays across various trails.

Kathleen spoke to the Connacht Tribune during a week-long cycling trip to Benidorm in Spain with twelve members of the group.

“We have a pilot, who is a sighted person who is in charge of gears, steering and signalling. We’re called the stokers who pedal like mad.”

Stargardt disease is caused by a recessive gene which affects the x chromosome. As a result, she didn’t pass on the condition to her son or daughter who are now in their early 20s.

Thanks to advances in technology, she can watch television, read books, keep up with texts and emails with audio description.

All the latest innovations will be among the many topics discussed at this year’s Retina annual conference for people with sight loss and their families. Latest figures show that there are approximately 272,000 people in Ireland living with blindness or vision impairment.

It returns to Dublin on Saturday, November 5, for its first in-person event since 2019, reveals spokesperson Don Delaney.

“Retina brings the sight loss community together with leading experts to hear about the latest treatments revolutionising eye care, to learn of the range of supports people can access, and to share stories and gain support from others on a similar journey.

“It offers an ideal opportunity for attendees to quiz the experts as to their own conditions and to find out about the promising developments taking place across a range of disease areas.”

Registration for the free conference that will be streamed live is open at fightingblindness.ie.