Community Views: Taking a Closer Look at MacularDegeneration.net

Recently the editorial staff of our community posted a prompt. A prompt is an effort to stimulate your responses about our community. Prompts are our way of engaging the community by asking a question about managing life with macular degeneration. When a prompt does particularly well, we’re able to create an article from it (like this one) that shares community members' experiences.

What has MacularDegeneration.net given you?

The prompt or question was posed to you, our online member. The answers are from only you guys. It allows us to understand what this site means to you and helps us understand our impact on this community.

This particular prompt was: 
The MacularDegeneration.net has given me ___________(fill in the blank).  

A helpful resource

• “The ability to accept my condition and understand I am not alone. I also get clear information and helpful hints on managing this disease. With tips on how to adjust to my visual disablities and get a better quality of life”.
• “Great information and immeasurable hope...God bless!”
• “Education, support and advocacy.  Knowledge is power.”
• “Encouragement.”
• “Lots of good advice, knowledge and support.”

To me, this is very heartening to read. Good work is being done here. We are a mutual support group and the support goes both ways. Being a member of this group provided me with ideas and tips on how to handle the many challenges low vision brings. Someone once said, the communal knowledge of the group far surpasses the knowledge of any individual. I sincerely believe this to be true.

Emotional support

• “Hope when I am feeling down.”
• “A chance to vent my frustrations. And share, so others may be more prepared.”
• “Knowledge, compassion, support and a sense of community.”
• “Support by sharing others stories and ideas.”
• “Encouraging information.  So thankful to all the info provided.”

So, you can see the impact our shared support group is having. It is wonderful to experience and witness. There truly is strength in numbers! If I am left to my own devices and thoughts about my low vision, that would be a pity. Luckily I don't have that as a problem, thanks to you! We get to share our experiences vicariously with one another. As a result, we experience and discover far more together than we would alone.

Here are some additional perks from this online group:

Clinical trials information. We share info on what the doctors and scientists are working on. Topics such as dry macular degeneration, geographic atrophy (GA), wet AMD, myopic macular degeneration MMD, Stargardts disease, etc.

Please remember that MacularDegeneration.net is far larger than just a Facebook group! If you go to your browser like Google and type MacularDegeneration.net you will find our online community. Look in the upper left portion of your screen where the 3 dashes are, tap that, and find a true wealth of information and articles. There is even a search function for you to type in a keyword and it will display what you are interested in.

Thank you!

So thank you for being a member of our online community. It certainly is possible to discover, educate and encourage one another in a virtual community. We kind of help each other here. Wishing you well on our shared journey.

Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat geographic atrophy (GA).