Ask the Advocates: Raising Awareness, Sharing Support

February is Age-Related Macular Degeneration (AMD) and Low Vision Awareness Month. This year, here at MacularDegeneration.net, we're bringing together perspectives from our Community Health Leaders on raising awareness, sharing knowledge, and building strong support communities of people around the world who live with macular degeneration.

Do you have a question for our Health Leaders? Start a forum discussion here.

Q: Is there anything you wish you knew before you were diagnosed, or when you were newly diagnosed?

Linda

When I was diagnosed, it would have been helpful had I known about support groups such as MacularDegeneration.net. Instead, I was left to my own devices to search Google for a supportive, credible community. Not everyone is that lucky and struggle on their own.

Sharon

I wish I had been given guidance in regard to the lifestyle choices that might have slowed my progression. I especially wish I had known the role diet plays in macular degeneration. I had to do the research myself to learn that the Mediterranean Diet is recommended. Living in a rural area, I don’t always have access to the food I need to eat. I wish I had known the importance of protecting my eyes from sun damage. For years I commuted to work facing the sun and never thought to wear sunglasses.

Brown Eyed Girl

I wish I had known that there was such a thing as a retina specialist. I saw an optometrist, then a general ophthalmologist for quite a few years, as I didn’t know retina specialists existed. No harm came to my eyes during these years, but I wish I had known about retina specialists from the beginning.

Q: What advice would you give to someone newly diagnosed with macular degeneration?

Linda

The best advice I could give anyone recently diagnosed with macular degeneration is to find a retina specialist they trust and can ask questions. If you’re not comfortable with your current doctor or their diagnosis, get a second opinion.

Sharon

First of all, I would say, "Don’t panic." There are steps you can take that may slow the progression of macular degeneration. Wear sunglasses, maintain a healthy weight [and diet], don't smoke, and keep a check on your blood pressure and stay active. Ask your doctor if AREDS2 [vitamin supplements] are right for you. Many doctors wait until you reach the intermediate stage to start the supplements.

Brown Eyed Girl

I would like them to know that people with macular degeneration rarely go completely blind, if they follow the treatment and lifestyle suggestions given to them by their doctor. They will retain their peripheral vision if macular degeneration is the only eye condition they have.¹

I would also suggest that they are clear about their diagnosis. Do they have wet or dry macular degeneration, and in which eye/eyes? If it is dry, what stage is it at? There are a lot of questions to ask at the beginning, and it is in the first few appointments that the specialists seem to take the time to answer questions, so be prepared. Write down your questions and the answers if possible.

I would like them to know that, if they require injections, it is possible to have them without pain. I have no pain with my injections, just a little pressure.

If you could change one thing about public awareness of macular degeneration, what would it be? What do you wish more people knew about MD/AMD?

Linda

The general public needs to be educated more about how macular degeneration is an invisible disability that deserves much more attention. There are needs, such as transportation, that are not being met because the general public is unaware. More education needs to happen to create more awareness. More of us with macular degeneration need to advocate in our towns/regions to inform others. Educating the public is paramount in getting more resources.

Brown Eyed Girl

I wish more people understood that vision loss from macular degeneration is not always obvious to family and friends, but it is obvious to us. It is difficult to live with and requires many adaptations. Just because people see us coping with our daily life, they should not presume that we don’t have any hurdles to overcome.