Guest Maria says: “God I just Love the feel of a good paperback.”

To that co-host Kerry replies emphatically: “Books are thrilling!”

“Working in the book industry and having a fresh book…the smell of a fresh book, there’s nothing like it,” says Maria Johnson of Girl Gone Blind. This was her life, for many years, before the age of fifty and before she started over in health and fitness and then as someone diagnosed with a genetic blindness condition.

On this Outlook we’re speaking with her about what life was like before blindness which includes both books and fitness, about getting her diagnosis at age fifty, and about how to choose the right name for an online presence as an advocate for her post-fifty life as someone diagnosed with LHON, Lebers Hereditary Optic Neuropathy, a mitochondrial condition of the optic nerve.

Our very own mother recognised the name of this particular condition when we told her what this week’s show was about because it was a diagnosis doctors thought sister/co-host Kerry had at one time early on in our family’s diagnosis journey with genetic blindness. Both conditions were first described by the same man: Theodor Karl Gustav von Leber, (discovering our eye condition, Leber’s Congenital Amaurosis and Maria’s, Lebers Hereditary Optic Neuropathy within two years of each other in 1869 and 1871).

She describes her road to acceptance which includes family also being impacted in all kinds of ways and about how she got so involved with the international conference for patients, their loved ones, and all sorts of doctors, scientists, and researchers along with her hit panel she moderates there each year.

Johnson says: “Sure, it wasn’t what I expected. It’s not what anyone expects when you lose vision later on in life, but you can still do so many things and that’s what I discovered - to recreate, reinvent, and restart my life, just without vision.”

In September, 2013 she was diagnosed with LHON and in September, 2025 she’s joined us to talk about the intervening twelve years of learning, acceptance, and advocacy and becoming girl, gone, blind as Girl Gone Blind.

Check out Maria’s website including her most excellent blog:

https://girlgoneblind.com