Life After the FIRST National Family Conference…
Meet FIRST Member, Anke Fronz
The 2016 FIRST National Conference-San Diego, is only 4 months away! If you are considering attending, we encourage you to read this article submitted by FIRST member, Anke Fronz, 5 months after attending the 2014 conference in Indianapolis.
My name is Anke and I have ARCI Congenital Ichthyosiform Erythroderma (CIE). After several years, I finally took Dr. Amy Paller’s advice and signed up for the FIRST conference this past June. It was a tricky decision but deep inside, I knew this would be life changing.
I remember Peanut (my wonderful dog) and I driving to the conference. It was an interesting drive with lots of rain and some sun – not to mention, my accompanying bundle of nerves, and all of the self-talk! Recently, I was asked to write about my experience at the conference, but truth be told, I do not even now where to start. I went in as an insecure person-nervous and lacking in self-confidence, yet, somehow, still ready to go. I set the intention that I would meet people, not hang out in my room, smile a lot and, of course, deepen my knowledge about dealing with ichthyosis.
Once we arrived, Peanut, my faithful travel companion, was more than happy to go for walks and meet everyone he saw at the hotel. Deep inside, I feel he made it his goal to get me out of my shyness and have fun.
Well, it worked! I felt quite differently on the days leading up to our arrival at the conference, than when I left. I met so many wonderful people and made some very good connections. I know that I will keep them from here on out and I cherish all the hugs, smiles and conversations over that weekend. It was so nice to meet people that were like me, and we had so many things in common. Plus, I met a lot of people that lived nearby and that was really nice to know.
For 42 years, I had a feeling that people with ichthyosis were out there, but I always felt alone. I guess because I never really met anyone with ichthyosis. Now, I am not afraid and I know that even though I may not see the friends I made or the people I met on a daily basis, there is this special wonderful group that I am part of and it makes me feel stronger. And, of course, thanks to Peanut, I met more people that I ever thought I would have on our first night at the hotel. It was wonderful and every part of me, inside and out, was smiling and beaming with happiness. Peanut was looking out after his mom for sure.
It was not only amazing to meet new people, but it was wonderful learning about how they handle their skin, and life in general. When I was talking or listening to conversations about family support, or at what age they started putting lotion on themselves etc., it was at those moments, I thought about my family, especially my mom. She passed away in 2004 and she was my biggest supporter. She never made me feel different or let me get down on myself. Although, she never met Dr. Paller, or heard of FIRST, I know she would have loved the conference, and I know that she probably played a part in me attending this one. There are plenty of questions that I have about my childhood that I will never know or understand and it’s okay. You can not live in the past, the most important thing is to be in the present, in the now, as they say.
So, for the now, I am a lot stronger and more fearless than I was back in June. I take more pride and ownership of my ARCI CIE, it makes me “me” and I am very happy and blessed to have been given this life. I also do not feel the need to hide as much, stay under make up all the time. And on those days that it is so humid, and everyone is complaining, I walk with my head held high. I also can laugh inside when people are wearing shorts and I am freezing and in a sweater and pants. I am so very grateful to Dr. Paller, my dad and FIRST for everything and helping me out. I know that there is nothing that I can not do, a person that I can not go up and talk to, because I am Anke, who loves to laugh, do new things and is not defined by just my skin. I look forward to future conferences, my work with FIRST, and growing the relationships I’ve created.
– Anke Fronz
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