Keepers of a Rare Space: Facebook’s Patient Support Group Moderators

Often people reach out to the Fibrous Dysplasia Foundation (FDF) because they feel isolated and overwhelmed with the challenges, decisions, and emotions that come with this diagnosis. FDF can offer vital information on the latest research and the most up-to-date information on FD/MAS treatment and care, on ways people can get involved, and recommendations for seeking knowledgeable medical care. But for the invaluable resource of fellowship, FDF reaches beyond our websites tools and recommends the FD/MAS Support Group on Facebook.

Carly Levin

“The “Fibrous Dysplasia” group on Facebook is a support group for patients of FD/MAS and their caregivers,” explains Lauren Rachelle Cox, one of the groups moderators, “There, people from all over the world come together to ask questions about FD/MAS, and seek and give support to one another.”

Carly Levin, Lauren Rachelle Cox and Skye Miu Steppe serve as co-moderators and administrators for the group. “Scott Coates started the group in 2007 when his son was diagnosed with FD,” Carly recalls,  “His hope was that it brought awareness to this often misdiagnosed and mistreated disease.” Scott  believed that the more people are aware of FD the less likely it will go undiscovered and untreated. He asked Carly to become a co-moderator In 2009, a position she’s held for the past ten years. A few years later, Skye and Lauren, who were both very active within the group, joined to help moderate the page.

Skye was 20 when she first joined. “I had my second  facial reconstruction surgery and I was in a really bad place. My mom found the group for me,” Skye recalls. From there Skye became very involved, also creating the FD Warriors website and newsletter. Lauren and Carly were similarly inspired to act beyond their capacity as web moderators. Lauren is the creator of the FD/MAS awareness ribbon which has come to be an important image and rallying symbol for the community and Carly, along with her family, serves as Team Captain for Team FD in the Million Dollar Bike Ride and the effort to raise money for FD/MAS research. “Hopefully people see they aren’t alone, and then if they want to get involved, they go for it!” says Lauren, “Basically, I want to show others that there are people out there fighting and that they can too.”

Lauren Rachelle Cox

All three women happened to have been diagnosed at 12 years old, and all three live full lives beyond their diagnosis. Carly lives in New York City and works for a digital health startup. She loves to travel; her trip bucket list includes New Zealand, Azores and Mauritius. Skye and Lauren both live in Tennessee and hold the title of wife and mother in addition to FD Warrior. Skye is in the process of selling her house and is a full time mom to her two little boys. Lauren is working on her degree Graphic Design and enjoys camping and extreme couponing. One year she cut her Christmas shopping bill in half and was able to use the savings to bring her family to Disney World! “I’m lucky that I have a huge support network,” adds Lauren, “My family, my husband, and my friends all make a huge difference in how I cope with this disease.” 

Not everyone has this same, open and supportive relationship with their personal communities regarding FD/MAS. This is why the group is closed; non-members cannot see what is being posted in the group and new members need to ask permission to be added into the group. “It’s important that this is a judgement-free space,” says Carly, and the other moderators wholeheartedly agree. “There are people who do not want their friends, family, or coworkers to know about their FD. They don’t want to be judged for being on pain medications or for whatever it is they are feeling” explains Skye, “I needed a place to go where I could vent and talk openly and KNOW that no one from my personal life would see it.” For that reason, Skye ended up removing many of her mom’s friends from the group. “It stopped being a space for me,” she says.

That being said, there are many group members who are not patients and are still welcome and valued members. Many parents whose children are too young for Facebook use the group as a resource too, and the group welcomes all friends and family as long as the patient feels comfortable with their involvement. As Lauren puts it, “This disease affects not just the patient, but everyone in the patient’s life. It affects us all differently, but we all need support. It’s okay to be sad, and be angry; but you can’t stay that way.”

Skye Miu Steppe and her son

“We hope that by connecting with other kids and families affected by FD, we can show them that it is possible to live life to the fullest despite physical challenges. When I began my journey with FD, I never could have imagined that the physical changes from this disease would pale in comparison to my emotional transformation.” says Carly. “I want others to know they’re not alone,” adds Lauren, “I still turn to the group as an outlet on my worst days. Not as much as I used to, but it absolutely is still a resource for me.”

It’s a testament to the group and these women who moderate the conversations on that page how important the space has become to so many. People who are active on the page have built real and lasting friendships based on the support they find there. “I hope that it give someone a place –not to call home,” says Skye, “but almost like that, a safe space they can go to and know they are welcome, that they aren’t alone.”