How Two Alopecia Areata Advocates Found and Spread Support on Social Media
Support networks can be life changing for individuals who are experiencing something people in their regular social circles don’t understand – as was the case for Kylie Bamberger and Supriya Surender, two women who have alopecia areata.
When Kylie first lost her hair at 12 years old, there weren’t many online support systems where people could discuss the impact hair loss had on them. She would create hand-written notes to pass out at school to help people understand why she looked different.
Late one night in college, she was inspired to do something impactful: share her first bald photo on social media. “When I lost my hair, there wasn’t much in terms of alopecia areata awareness. There weren’t online support groups or social media outlets. I knew I had to break that trend,” said Kylie. The response to her post was overwhelming and made Kylie, who has now amassed a large social media following, realize the true power of awareness and support.
Supriya began to lose her hair in her early 30s. She spent a lot of time feeling alone and in denial, but eventually found her first support group through social media, where she connected with a group of individuals also living with alopecia areata, including Kylie. “Connecting with the alopecia areata community completely changed my perspective on what my life could be,” said Supriya. “I was inspired by incredible women, like Kylie, who so effortlessly lived in their truth and owned the disease.”
Supriya was inspired to start growing her own social media platform. Now, she shares her journey with alopecia areata with her social media followers, emphasizing the importance of a support system when navigating hair loss.
Supriya and Kylie are now sharing their stories as part of a Pfizer campaign, called Reflections of Alopecia Areata, to help raise awareness, dispel myths and drive understanding of the autoimmune disease.
“Many people don’t know that alopecia areata is more than just hair loss — it’s an autoimmune disease. By sharing my story through my platform and through Reflections of Alopecia Areata, I hope to help raise awareness about this disease and the experience of those living with it,” said Kylie. “Alopecia areata can be a very isolating and emotional disease, and I want others to know they aren’t alone ... they have a huge support system full of people like me who understand first- hand what they’re going through.”