A New FH Family

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Written by: Mackenzie Ames

I really didn’t know what to expect from my FH Advocate Training. I didn’t know I was going to learn science from leading experts. I didn’t know I was going to make deep, meaningful connections with people I had never met, and I definitely didn’t know I was going to find a new passion.

Gathered in a small room of refreshments and check-in materials, were the people who were about to become my fellow FH Advocates for Awareness – my new FH family.

For this first meeting, we went around the room and briefly introduced ourselves. We didn’t make it halfway around before tissues we’re being handed out. All the stories had different details, but the feelings were all the same. It was in that moment I knew I was a part of something very special. I had never known anyone outside of my own family with FH, and now here I was in a room surrounded by people who understood. I felt the gravity of why we were all there, and I reached for a tissue of my own.

Luckily, the tears didn’t last long. We had work to do. We hit the ground running with two days of interviews, science discussions, lessons on social media and brainstorms on how to raise FH awareness. The days were long, but they didn’t feel like it – well not until I saw my bed at the end of the day! As I frantically took notes through every session, I knew there were few things in my life more important than what I was learning that weekend. I was doing this for my family, my future children and for the thousands of people out there who don’t even know they have FH.

I learned a lot in those sessions, but I learned more in the dinners, lunches and downtime with my fellow advocates. I met a hilarious couple struggling to better understand HoFH for their son. I met a woman with the brightest smile that no amount of cholesterol could wipe away. I met a young man whose dream was taken away by FH, but that hasn’t stopped him from embracing it and becoming a remarkable advocate in the process. Every advocate brought their own story and experiences to the group, and I felt completely humbled by all of them.

Call me crazy, but after those two and a half days in Pasadena, I was grateful for my FH. Sure it means I have to take twelve pills a day and answer intimate questions about the “things” on my face, but I also get to be a part of a community full of funny, intelligent, amazing people. Not bad company to keep, if you ask me.

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