Common Post-Diagnosis Questions

When a friend, spouse or family member is diagnosed with wet macular degeneration, it can be overwhelming. What does this mean for their future? What does it mean for your future as a caregiver? How much support will this person need from you? There are many thoughts that can pop into your head, and we have collected some of the common questions you may have at diagnosis and during early treatment visits to help you along.

At diagnosis

What is wet macular degeneration, and how does it affect vision?

• Wet macular degeneration is caused by an excess of vascular endothelial growth factor (VEGF), which leads to the growth of abnormal blood vessels inside the eye¹. These abnormal blood vessels leak fluid and blood, destroying the macula^1,2. While wet macular degeneration typically starts in one eye, it may eventually impact both eyes². 
• Wet macular degeneration diminishes central vision, resulting in blurring, obscuring or distorting what your loved one sees when they look straight ahead². To learn about a simulation of vision with wet macular degeneration, click here. 

What can and can’t someone diagnosed with wet macular degeneration do anymore?

• What someone with wet macular degeneration can and cannot do may evolve as you help them continue treatment. It is crucial to stay in regular contact with their doctor, through treatment appointments and telemedicine, to ensure the physician is kept updated on condition progression and to determine which activities are feasible.

Why did this happen?

• It’s important to remember that a macular degeneration diagnosis is not your fault, nor the fault of your loved one with the condition. Numerous factors can cause wet macular degeneration, including a dry macular degeneration diagnosis or family history^3,4. But with proper management and treatment, vision can be maintained for longer and potentially even improved². To learn more, click here.

First treatment visit

Will someone receiving wet macular degeneration treatment be in pain during the injection? Will the injections get easier?

• Supporting someone through a treatment appointment can be daunting as a caretaker. But your loved one’s doctor will do everything they can to ensure that the injection process is as painless and comfortable as possible. The eye is numbed before an injection is given², and many patients say the worry is worse than the procedure itself. Some patients have found certain techniques help them remain calm for appointments. To understand more about the injection process and ways to prepare for and recover from treatment, click here.

How can we monitor wet macular degeneration progression from home?

• One simple at-home monitoring technique you can help a person with wet macular degeneration use is an Amsler grid; click here to access. Let their eye care team know, via phone or a telemedicine appointment, of any changes immediately.

Will my loved one ever no longer need treatment?

• While the frequency of injections may change over time, you should expect ongoing treatment over the long-term, given the chronic, degenerative nature of this disease⁵. However, if you help them stay on treatment, you can increase the likelihood of maintaining their vision. 

Second treatment visit

What can I do to make sure someone diagnosed with wet macular degeneration can continue to pursue the hobbies and activities they love?

• The best thing that you can do is help them stay on treatment and keep in regular contact with their doctor to maintain a treatment plan. You can also work with them to make simple changes at home, to help them maintain safety and independence. Click here for practical home tips.

Where can we look for more help? Are there any support groups for those with wet macular degeneration?

• As you and your loved one continue to navigate wet macular degeneration, it will be important to expand your support network. Click here to learn more about how to do just that.

This is hard on me as a caregiver. Are there resources that I can turn to?

• As a caregiver, it is important to take care of yourself, too. Click here for five ways to care for yourself while you care for another.

For additional guidance, including questions you may have for your eye care team, click here.

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References

¹Kim R. Introduction, mechanism of action and rationale for anti-vascular endothelial growth factor drugs in age-related macular degeneration. Indian J Ophthalmol. 2007;55(6):413-415.

²National Eye Institute. Facts About Age-Related Macular Degeneration. Available at https://nei.nih.gov/health/maculardegen/armd_facts (link is external). Accessed May 2020.

³Cheung CM, Laude A, Yeo I, et al. Systemic, Ocular and Genetic Risk Factors for Age-related Macular Degeneration and Polypoidal Choroidal Vasculopathy in Singaporeans. Sci Rep. 2017;7:41386.

⁴Risk Factors for Macular Degeneration. American Macular Degeneration Foundation website. Available at: https://www.macular.org/risk-factors  Accessed May 2020.

⁵Holz FG, Schmitz-Valckenberg S, and Fleckenstein M. Recent developments in the treatment of age-related macular degeneration. J Clin Invest. 2014;124:1430-8.