At a Glaucoma Research Foundation Patient Summit, a panel of glaucoma experts and patients offered tips on managing a glaucoma diagnosis, including the importance of finding specialists and being your own healthcare advocate. Here are their suggestions.*

What to do when first diagnosed (1:57)

Gathering as much information as possible about glaucoma is important when first diagnosed, says A. Sydney Williams, M.D. of the University of California, San Francisco. Many newly diagnosed patients are surprised, he says, since they feel fine in the early disease stages, and some don’t believe there’s anything wrong. “They need to look things up and ask a lot of questions.” He advises patients to get actively involved in their care, to help manage the disease’s complexities.

Andrew Iwach, M.D. of the Glaucoma Center of San Francisco says that many patients are initially scared that they’re going to go blind. While that’s an eventual possibility, he emphasizes that sight can often be preserved, especially with early diagnosis and treatment. Even a higher risk for glaucoma should be discussed with a new doctor immediately, so there’s time to consider care and treatment options. 

Dealing with the initial diagnosis (5:29)

Glaucoma patient Stephanie Handler says that she was initially shocked at her diagnosis, considering that she had just come in for a standard eye exam. Learning about the disease helped bring her to acceptance. Now, eight years on, she’s been on four different eye drops and her glaucoma is well controlled. She advises others to come to terms with their new diagnosis however they can; for her, that was by gathering as much information as possible from online resources, and not being afraid to ask questions.

Why share a glaucoma diagnosis with your other doctors? (9:05)

The eyes are not only the windows to the soul but also sometimes to other medical problems. Iwach explains that certain eye medications, like beta blockers, are systemic and can affect the body as a whole, while drugs meant for other bodily systems can affect eye pressure. Sharing your complete medical and medication histories with all your doctors is important so that your health team can better tailor your care to your specific needs.

Seeking a glaucoma specialist (10:46)

Not every ophthalmologist specializes in glaucoma, warns Williams. Ophthalmology has several sub-specialties. He advises new patients to see a true glaucoma specialist soon after diagnosis. Glaucoma is “tricky” to diagnose in its early stages. Patients can be misdiagnosed and unnecessarily treated, or overtreated, for glaucoma. 

When should you get a second opinion? (14:07)

“If you have an inkling you need a second opinion, that means you need a second opinion,” Iwach says. “You have the right to ask for a second opinion.” A doctor getting upset over this request is a red flag. Your medical record belongs to you. If you decide to get a second opinion, Iwach says (at 30:49), it’s helpful to get all your testing done at the same center, for easier results analysis and interpretation.

Being your own advocate (16:47)

After many years of living with suspected juvenile glaucoma without incident, Rebecca Vilenderer developed nerve damage despite treatment for high eye pressure. As disease progression continued, she reached out for more help to preserve her sight. Experience has taught her ways to become actively involved in her care, including:

• Learning the technical aspects of eye tests, to better understand her rate of progression
• Undergoing diurnal testing, from which she learned that her eye pressure fluctuates significantly during the day without proper treatment
• Sticking diligently to her eye drop regimen (including proper storage), to avoid pressure spikes and further damage
• Keeping her doctor appointments, to catch any unexpected rises in pressure
• Seeing a specialist annually who prescribes a treatment plan for that year

Working with your doctor (26:00)

Amanda Eddy, another glaucoma patient, believes it’s important to find a doctor you can trust and build a solid relationship with so you feel comfortable asking questions. Since glaucoma is a lifetime proposition, it’s vital that you understand what’s happening in your eyes. “Trust the process and trust your treatment regimen,” she advises. Be diligent with medications and appointments. “Usually, it works really, really well.”

*Glaucoma Research Foundation. (2019, May 16). Glaucoma: Creating Your Own “A” Team for Care [Video file]. Retrieved from https://www.youtube.com/watch?v=BhBM6HQstjE