As a glaucoma specialist, I have words of advice that I like to give to every glaucoma patient — words of advice that I’ve gathered over the years and feel that each patient should know to better take control of their disease.
- Glaucoma Prevalence
- Advice for Patients
Glaucoma is an eye condition that, if left untreated, will lead to blindness, and that blindness is irreversible. We know that 50% of people who have glaucoma are not aware that they actually have the disease, and we know that people who are aware that they have the disease still struggle with trying to live with glaucoma and take care of it.
Imagine that you lost your vision today. What would you miss most? I want you to take a moment to write it down. Would it be that you would miss your family, seeing their faces, the memories that you remember having with them? Would it be certain sites that you’ve seen, if you’ve traveled around the world and seen certain beautiful scenes? Or maybe it might be your independence, being able to take care of yourself, walk without fear. These are things that could actually go if your glaucoma is left untreated.
If you have been recently diagnosed with glaucoma, or if you are struggling with trying to deal with glaucoma, here are some top pieces of advice from a glaucoma specialist to help you cope with your diagnosis and treatment.
- Accept the disease. When you have been diagnosed from a trusted doctor that you have glaucoma, glaucoma doesn’t go away, and glaucoma won’t go on pause just because you’re not ready to accept it. Staying in denial will not help slow down the disease. If you’re able to accept the disease, now you can actually take control of it and do something about it. You have to be your own advocate.
- You need to show up and be present. This means that you need to follow up with your regular eye exams. Even if your glaucoma seems to be doing fine and you’re under good care from an eye doctor, glaucoma can change, and it can change without you knowing it. It can become more aggressive, the drops can stop working for you, or the treatments that you have can stop working, and there might be a need to adjust your treatment. If you don’t show up for your regular eye exams like you’re supposed to, things can change. And you can’t go backwards, so you need to show up.
- You need to speak out. “Speak out” means you have to be present, to ask questions. It’s your eyes and your vision, so you don’t want to just go to the doctor and not know really what’s going on. It’s okay to ask questions. It’s okay to ask the doctor, “Am I on target or has anything changed?” It’s good to ask those questions so you know, because the more that you understand what’s happening with your own eyes, the more that you can try to stay on top of it.
Speaking out also means: speak out to your family members. Glaucoma is hereditary. Your family members are also at risk for glaucoma because you have it. And if you don’t tell them, you’re actually doing them a disservice, because the earlier they find out, the easier it is for them to treat it. You want to be able to give them the gift of sight. You know that you have glaucoma, and you might not have known that you had it when it was first diagnosed. You can imagine that they also might have glaucoma but not know it, so allow them to know by sharing that information with them.
Glaucoma risk in families is 4 to 9 times higher; it’s very strongly hereditary, especially among siblings. Anyone who is a blood relative is at increased risk. Let your family members know that you have glaucoma, that they may be at risk, and encourage them to have their eyes screened. You might very well be giving them the gift of sight.
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Posted on November 5, 2019 / Reviewed October 22, 2021
Constance Okeke, MD, MSCE
Dr. Okeke is an assistant professor of ophthalmology at Eastern Virginia Medical School in Norfolk, VA, and a glaucoma specialist and cataract surgeon at Virginia Eye Consultants.