Affecting over two million Americans, open-angle glaucoma is the most common form of glaucoma, and most often arises in older adults. Many are unaware, however, of the less common juvenile open-angle glaucoma (JOAG), a form of childhood glaucoma that develops between ages 3 and 40 and affects about 1 in 50,000 people. In a recent interview with Responsum Health, a young Glaucoma Community member describes her experience with a new diagnosis of JOAG.*

Hiding in Plain Sight

Like others in her family, Jessica had been living with nearsightedness all her life. Just 20 years old, Jessica received her glaucoma diagnosis only a few months ago, but she’s been on quite a journey since then. 

Though she goes to college in the U.S., all of Jessica’s doctors are based in Asia, where she returns often to see her family. She says she’d been having vision problems for some time, but thought she was just overdoing things: staring at screens too long, staying out too late at night, and generally feeling stressed. That turned out not to be the case.

When she went to Asia during her last winter break to rest, she still noticed “discomfort in her vision,” and went to see her local doctor there, who suggested that she might have glaucoma. Concerned, she went to a hospital specializing in glaucoma treatment, where it was confirmed that she had the chronic eye disease.

Jessica’s glaucoma is unusual, not only because of her young age, but also because she has a less-common subset of open-angle glaucoma called normal-tension glaucoma, in which her eye pressure remains normal. She believes that this is the reason her condition was overlooked during routine checkups. 

Emotional Impact

When the prospect of glaucoma was first suggested by local clinicians, Jessica had no idea what it was; she had never even heard the word. Her father was already familiar with the disease and was in disbelief. When she learned what glaucoma was, she says, she was “kind of in shock,” but at the same time she found that her family’s and doctors’ surprise at the diagnosis had a calming effect on her. 

Jessica met her diagnosis with immediate action, jumping into research about the condition, treatment options, and prognosis; and planning out her care regimen. Once the initial flurry of activity was done, however, the reality of what glaucoma could mean in her life set in. She approached her emotional path as a grief process that she had to work through, but says that she “experienced the stages of grief in mixed order,” starting with what seemed like acceptance, then going through a phase of denial, fear, and confusion. 

“At first, it was ‘okay, I have the disease,’ she says, “but then later on, I kind of caught on to how serious it could be because it could lead to blindness and then, I’m so young…it might be 10 years later that I become blind, but I would only be 30 years old.”

It’s taken her some time to get used to the idea, but she’s taken her parents’ advice and is trying to live day to day without worrying and stressing out about the future. She credits the support of her family and friends for making it easier for her to accept the diagnosis.

Treatment Experience

Even though she has normal-tension glaucoma, Jessica’s treatment still mainly consists of eye drops intended to lower her internal eye pressure. She’s also read extensively on how to live healthily with glaucoma. She doesn’t know if what she’s reading really works, she says, but she’s not taking chances. She exercises at a gym almost daily, watches her stress levels, eats a healthy diet, and avoids sleeping on her side. 

Jessica has yet to find a doctor in New York who both meets her needs and who meshes well with her personality, but she persists in her search because she requires regular eye exams and monitoring of her medication. 

Glaucoma and School

Jessica says glaucoma’s impact on school has had its pros and cons. Because her diagnosis overlapped with the start of spring semester, Jessica had to curb her busy schedule. She dropped all her scheduled classes, found two alternate courses which she took online from Asia, stopped her school club activity, and had numerous meetings with school advisors on how to maintain her health while preparing to graduate on time. On the positive side, she says, taking fewer classes has given her “a chance to live a way more stress-free life,” and more time to focus on herself. 

Glaucoma and Social Life

The support of her friends has made her social life less of a struggle, as well. They “really understand the situation I’m in,” she says, and have taken it in stride. She confides, however, that her internal struggle with the disease is something “that I guess only people with glaucoma understand.” Aside from occasional headaches and sensing vision loss, the disease isn’t something readily felt. 

At first, she says, her fear caused her to see “signs of weird things happening,” and she was scared to go out at night and sleep in a dark room. When it’s dark outside, she still wonders if it’s really dark or if it’s the glaucoma, but much of her fear has since abated, and she’s back to going out a lot, even at night.

Glaucoma and Work

Since Jessica works remotely, she hasn’t had to address possible impacts on her colleagues or office environment, and the glaucoma has not affected her performance. In fact, she says, she hasn’t told her employer about her condition, and doesn’t intend to. Fortunately, her company has always been understanding about school and her social and family life, so taking time off when necessary isn’t an issue. 

She’s now back in New York, and is grateful for all the support that has made that transition easier than it might have been.

What She Wishes She Knew When First Diagnosed

Jessica wishes there were more evidence-based articles on healthy living with glaucoma for someone her age. “If there were standards or set guidelines for people with glaucoma,” she says, “it would have been so much more helpful when I first received a diagnosis.” 

She’s also disappointed in what she feels is a general lack of relevant studies. “I feel if more research has been done amongst diverse groups, or just in general, it can help to bring you experiments or case trials, and different outcomes that could potentially create a cure for glaucoma.” 

What She’d Like to Know More About with Glaucoma

Jessica feels there isn’t a very clear explanation for glaucoma. In her experience, whether speaking with doctors or people in the disease community, no one can really answer the question of “why this disease came to their body…I think having a reason is so important to accepting your diagnosis.” She’d like to see greater knowledge among both patients and clinicians concerning why and how glaucoma arises.

Words of Wisdom for the Glaucoma Community

Initially, Jessica thought her glaucoma developed because of her lifestyle: too much screen time, unhealthy eating, staying out too late every day. After a lot of research and reflection, she’s come to realize that having glaucoma is not her fault, and she urges others not to fault themselves, either. “Glaucoma is just a disease that is kind of unlucky, but I would never blame it on yourself. It just happens and it’s very unfortunate, but I think with time we can all kind of learn to accept it.”

While “glaucoma is a very scary disease because it leads to blindness,” she continues, it has the advantage of not causing physical pain. It also doesn’t have to turn your life completely upside-down, she says. “All we have to do is put in eye drops and do regular checkups, which we already kind of do anyway.”

Little has changed for her, she says. Though she has difficulty reading with her left eye, she views it as more of an inconvenience, and takes a practical approach, saying that humans have adapted to change, and if there’s disease in one eye, the healthy eye will learn to compensate. 

Ultimately, Jessica encourages others to “Live your life how you used to live before you got the diagnosis…Be comfortable feeling sad about it…but don’t be too anxious or depressed over it…Once you fully accept your diagnosis, you might regret being so depressed…and not really living your full potential.” In the end, she advises, it’s best to just “accept it and know what you’re dealing with.”

*Responsum Health. (2022, April 27). Jessica’s Journey: Adjusting to Life with Juvenile Open-Angle Glaucoma.