It Takes A Village, or an Online Facebook Community
By: David Sayas
Originally posted 8/16/22
Vascular Cures believes in supporting patients, caregivers, and advocates by sharing their experiences in a safe space. We believe this is essential to spreading education and disease awareness in ways most meaningful to the people impacted.
Our patient Partner and Vascular Cures’ board member, Steve Hamburger, founded a Facebook Community PAD support group that has grown to over 400+ members. Reflecting on the past few months, Steve shares the following about his journey as a moderator and administrator of this online community: “I started this community as a support group for people with PAD because I wanted to share my experience of being able to avoid bypass or any other surgery by adopting a walking regimen.
Sharon, who was a participant and is now an administrator, convinced me to rename the group and broaden its appeal to everyone with PAD, as walking could benefit many people. Sharing my story helped the group grow in numbers. I realize that managing PAD is a true balancing act of lifestyle choices consisting of walking, exercise, diet, and other helpful habits such as good sleep and working closely with a care team to understand treatment options. The goal of our group is to continue to add more information that supports healthy habits in hopes of preventing unnecessary surgery.”
Steve also added new administrators, like Sharon and Pam, to help include diverse perspectives, thoughts, and ideas to better support the expanding online community. When asked how this role and group impacted them, both Pam and Sharon expressed feelings of belonging and support.
Pam says, “I am so proud to be a part of this group to share my story and watch people in the group learn how vital support and early diagnosis are essential, which is a large part of my story.
“As an African American woman, it is imperative to get this information out to communities that don’t have access to information about PAD or knowledge of what it is. This support group is a way to reach everyone regardless of location.”
Sharon has also experienced significant belonging and has great hopes for the future of the PAD Facebook Group. She reflects, “I have been involved in support groups for nearly 20 years, when I was diagnosed in 2010 with a disease that I could barely pronounce, I went searching for a support group. It took a while to find one. That said a lot. But once I found it, I felt at home, surrounded by people who understood and cared and knew how to distinguish self–pity from fear… I’m hoping that this group, as it grows and matures, will see that the support isn’t in giving advice or solving problems but in giving from the heart with simple words like “I hear”, “I’m sorry”, “how can I help”, “we’re here for you” and “reach out your hand and hold mine tightly”.
“To open your heart to another without judgment or fear is a special place found in support groups. To help others feel that is something truly wonderful.”
A group member shared “This group has really changed my life and lifestyle. I’ve been following and reading to get good advice off people with the same condition as me. I’m living a healthy active life and learning to cope when it hurts too. Thank you all.”
If you would like to learn more about joining or starting an online patient community, or are interested in reaching out to Pam, Steve, and/or Sharon, join their Facebook group at https://www.facebook.com/groups/339414847401943.
Important Note: Health-related information on this page, including text, graphics, images and other material is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. All opinions discussed in the PAD Facebook Group and Online Community are solely at the discretion of the administrators and community members and participants.
To learn more about Vascular Cures’ Patients as Partners Program, please visit: https://vascularcures.org/patients-as-partners/
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