The Power of Connection: Peer Support for Glaucoma Patients and Their Loved Ones

Whether you’ve recently been diagnosed with glaucoma or are learning how to cope, connecting with others can be helpful and powerful.

Human connection is a powerful thing and a core human need. Our very existence depends on connection for survival. In ancient civilizations, humans relied on connection to build a community to share food, care for infants, and build social networks to meet the daily challenges of their environments. We’re not so different today. We forge social connections and embrace communities to learn new things, share our experiences, and gain or give support.

Humans Are Hardwired to Connect

Extensive neuroscience research shows that humans are hardwired to connect with others. For example, scientific evidence demonstrates that mirror neurons in our brains are stimulated when we interact, making pathways in our brains light up to mirror the other person’s emotions and behaviors when talking with someone.

The Importance of Human Connection

Maslow’s “hierarchy of needs” theory, published in 1943, argued that a person couldn’t reach fulfillment without love and belonging and that it followed closely behind basic needs, such as food and shelter. At the time, there was little scientific evidence to support his theory. However, emerging research has given his theory credibility and takes it a step further, suggesting that the need to connect socially is a basic human need — as crucial to survival as food, shelter, and water.

Linking Community with Health

Connecting also has proven tangible health benefits. But just how strong is the relationship between a person’s social connection and health?

One landmark study showed that a lack of social connection is a greater detriment to health than obesity, smoking, and high blood pressure. Another study found that lonely people are at higher risk for multiple illnesses, including heart disease, cancer, and Alzheimer’s.

Research has also shown compelling evidence that strong social relationships can:

• Increase longevity by as much as 50 percent
• Strengthen your immune system
• Help you recover from disease faster
• Lower levels of anxiety and depression
• Boost your self-esteem

You’re Not Alone

Whether you’ve recently been diagnosed with glaucoma, are learning how to cope, or you’re the loved one of someone living with glaucoma, connecting with others can be helpful and powerful.

Your medical team will provide information about treatment options and guide you through the process, but connecting with people with lived experience can also be helpful. Just as research continues to uncover medical breakthroughs that deliver hope, connecting with others experiencing similar situations can help people with glaucoma lead full lives.

The annual Glaucoma Patient Summit offers an excellent opportunity to network, learn, and collaborate with patients, caregivers, glaucoma specialists, and researchers.

Consult your eye doctor, check with area hospitals, and talk to eye care centers to locate local support groups.

Technology, such as social media platforms, has broadened opportunities to connect with people around the globe who face similar challenges.

The Glaucoma Research Foundation has partnered with Prevent Blindness to offer The Glaucoma Community. In addition to providing an opportunity to connect with other people living with glaucoma and caregivers to share experiences and exchange ideas, the site also provides a newsfeed to keep you up to date on the latest glaucoma news. It also includes an easy system to store your medical information.

We’ve gathered the following links that offer support for people with glaucoma or low vision.

Penn Medicine: Scheie’s Vision Loss Support Group (Philadelphia)

Second Sense Support Groups (Chicago, IL)

Glaucoma Support and Education Group (GSEG) — this New York based support group hosts virtual meetings and uses Facebook and email to post its announcements. Email GSEG to request to join their email list.

Eye2Eye Peer Support Program for Vision Loss — Offers one-to-one support over the phone in English and Spanish. Affiliated with Rutgers School of Health Professions in Newark, New Jersey, Eye2Eye is a free, phone-based, peer support program to assist visually-impaired adults and their families.

Online Glaucoma Support Group: EyeDocNews Community

Online Google Group: APUP (Adult Patients Under Pressure) — must have a Google account to join.

The Glaucoma Community (website and mobile app)

Glaucoma Support – Facebook private group

Glaucoma Support – Facebook community

Virtual Glaucoma Support Group – Facebook public group (Kent Association for the Blind, UK)

Support Groups and Other Resources – VisionAware.org

Vision Exchange: Online Resource for Support Group Leaders

Vision and Eye Health: Support Groups (Vision Australia)

Support for caregivers

Caregiver Action Network
A non-profit organization based in Washington, DC providing education, peer support, and resources to family caregivers across the country free of charge.

If you can’t find a group that works for you, there’s always the option of starting an online or in-person support group. Create flyers with your intent to form a group and distribute them in your community. Talk with your eye doctor to see if they will permit you to place the flyers in their office.

If you want to start an in-person group, check with a community center in your area to see if they can provide space. You can also see if an area church will offer meeting space.

One of the most accessible ways to establish an online support group is through Facebook. Take the following steps to create a group:

1. Click in the top right of Facebook and select Group.
2. Enter the group name.
3. Select the privacy option. If you selected private, select whether to make your group visible or hidden.
4. Add people to your group.
5. Click Create.

Personalize your Facebook group by uploading a cover photo and adding a description.

Connecting to Find a Cure

Another valuable connection is working together to find a cure for glaucoma, which we can all do. Every contribution helps bring us closer to finding a cure for glaucoma. Whether you donate cash or stock, create a fundraising event, or even donate a vehicle or boat, your donation will give hope to those living with glaucoma and accelerate our research.

Posted on October 25, 2022; last updated on February 7, 2024