Community Member Profile: Sarah Guenzburger
Veteran Youth Mentor, Legislative Liaison and Advocacy Committee Member Sarah Guenzburger shares her patient story, and discusses why legislative advocacy is so important to her and the alopecia areata community.
My name is Sarah, and I have alopecia. And by “I have alopecia,” I mean that I have a rich life, with amazing alopecia friends, a passion for advocacy, a career as a healthcare provider that I have always dreamed of, and I also happen to be bald. I hope that I am able to demonstrate by example that I can be “different” AND live a fulfilling life. That I can go after and obtain the things I want and deserve. That having alopecia has allowed me to develop the life and the skills which I now have.
I started attending the NAAF conferences at age 6, less than a year after being diagnosed. I am incredibly grateful that my family brought me to the conferences right away. My parents were pivotal in making sure I knew that there was nothing inherently wrong with me, that others were just curious, that education held power, and that explaining alopecia to others enabled them to understand what was going on. I also speak about my experiences with my alopecia friends, with whom I have an unparalleled connection. Through NAAF, I have met countless inspiring, beautiful, powerful humans, who continue to encourage me to authentically live my best life. I have also become passionate about alopecia advocacy. I am now a Legislative Liaison, on the Advocacy Committee, and have participated in countless meetings with our legislators. Advocacy has become an outlet for education and empowerment for me, and provides the opportunity to brighten the future for others with alopecia. I also mentor a beautiful, fun, amazing girl named Meghan through NAAF’s mentorship program. Connecting with and supporting Meghan and her family has been an incredibly fulfilling experience.
Living with alopecia has also presented challenges. I used to crave the ability to be “normal”. Honestly, I still do sometimes. What a privilege, to look “normal”. To walk down the street without feeling so many eyes on my body, on my head. To meet someone new and wonder what their first impression of me might be. To be bad at directions (guilty) and walk back the way I came from without anyone noticing me. To just be a girl at a bar that a guy might want to talk to. To be “normal.” It does sound like it would be nice sometimes.
But I have grown to have more appreciation for standing out. For being different, in a good way, although different doesn’t always have a positive connotation. Although standing out is often harder than blending in. We can’t create change if we are the same as everyone else.
I get the privilege of being different. I am memorable. I am empathetic. I have a strong sense of self. I have the opportunity and responsibility to educate people on alopecia, to make the world a more understanding and accepting place one conversation at a time. To open the eyes of others to people who are different than themselves. I encourage you to think about what makes you different, compassionate, and what makes you stand out (in a good way, of course) and to surround yourself with people who love that about you.