The Glaucoma Research Foundation (GRF) Patient Summit highlights the latest in glaucoma treatment advances and gives patients practical information to help them live their best lives with the disease. In this second recording in a series from the fourth annual Summit, award-winning designer and full-time artist Patricia Caulfield discusses her glaucoma diagnosis and how she’s adjusted to life with the disease.* 

‘You have glaucoma’ (1:18)

Patricia Caulfield sat dumbfounded 10 years ago during a routine optometrist visit when she heard the words “You have glaucoma.” She recalls going into a panic. “This wasn’t supposed to happen.” She was now faced with a new and potentially lifelong challenge.

Affecting what she loved (2:11)

At the time, Caulfield was designing, and installing kitchens and bathrooms with a contractor and custom cabinet maker. She took measurements herself, and created spaces to her own specifications. Every detail was included, every sketch drawn by hand. “I loved what I did,” she says. As her glaucoma progressed, however, her work became laborious. Reading a tape measure, drafting plans, and even driving, became difficult. 

A turn for the worse (2:58)

Caulfield says her eye pressure spiked five years into her diagnosis, her readings rising from the teens to the forties. (Normal pressure is generally 10-20.) Vision in her left eye began to quickly deteriorate. At Johns Hopkins’ Wilmer Eye Institute, her doctor advised shunt implant. Her recovery took a while, but Caulfield says she’s grateful it was a success.

Back to her ‘first love,’ with a twist (3:37)

Still, Caulfield’s design work became increasingly stressful, frustrating, “and just plain impossible.” She adapted by returning to her “first love” of drawing and painting. Her drawings, like her interior designs, had always been very detailed. To accommodate her glaucoma, however, Caulfield decided to change her style and shift to abstract work.

The change was not as simple as it sounds, she says. It took “many, many courses” and learning new techniques to finally feel comfortable with her new style.

More setbacks (4:48)

Caulfield received another unwelcome surprise when she began experiencing central vision loss in her right eye, despite using many different eye drops. Her new doctor at Johns Hopkins recommended an immediate trabeculectomy. After surgery in the right eye, however, eye pressure increased in her left eye and Caulfield underwent a second trabeculectomy. 

Disease now stable (5:31)

Caulfield says she feels “very fortunate” for having caring and compassionate doctors who knew what to do when help was needed. Her glaucoma is currently stable, her eye pressure normal, and she needs no medications. Despite her times of panic and stress over potential outcomes, she says the support of her spouse, family, and friends carried her through “really tough times.” Equally important to her good outcome, she says, were:

• Gaining knowledge of glaucoma,
• Learning about treatment options, and
• Accepting the disease.

‘Vision means more than sight’ (6:40)

Caulfield expresses her appreciation for people she’s met and experiences she’s had during the course of her disease journey. It’s a path she says she never would have taken without glaucoma. Her creativity intact, Caulfield has realized that “vision means more than sight.” She’s now curating artwork from other visually impaired artists to be shown at the 2023 Glaucoma 360 event in San Francisco. 

She advises fellow patients to: 

• Have fun and laugh more,
• Keep up with regular checkups,
• Stay motivated, keep striving,
• Eat your vegetables, and
• Exercise.

“You’ve got this,” she says. “Love every moment that you are given, no matter what it brings. Run with it and don’t look back.”

*Glaucoma Research Foundation. (2022, August 16). Glaucoma: A Patient’s Perspective [Video file]. Retrieved from https://www.youtube.com/watch?v=K7-52uuXnt8