FIRST, the leader in advocacy and support for those affected with ichthyosis, is officially forming a group of young individuals that will address the most relevant issues and concerns, faced by those between the ages of 18 to 30. Whether it is job searching, dating or even finding the type of make-up that works best with your skin condition, our young adults with ichthyosis (also known as YAWI), will be bringing you tips, advice, events and online resources to help you through one of the most transitional times of your life. At the moment, the group is small in numbers and there’s plenty of opportunity to get involved.
Today, we invited FIRST member Greg LiCalzi, a YAWI himself and the originator of the YAWI concept, to offer you a little more insight about this exciting new chapter for FIRST…
Hello FIRST readers! I would like to introduce myself. My name is Greg LiCalzi. I am a 31 year guy with lamellar ichthyosis, and I am proud to lead a new group at FIRST focused on young adults with ichthyosis. I live in New York City with my wife and four month old daughter, Colette. I have struggled with ichthyosis my entire life and feel privileged that FIRST has given me this opportunity to help start this amazing group. I think we can really help each other out.
“Young Adults With Ichthyosis,” what a mouthful! From now on, let’s just call ourselves YAWI.
Who is a YAWI?
A YAWI is someone with ichthyosis between the ages of 18 – 30. This is an important age when you are making many vital decisions in your life. During these years, many folks are dealing with the highs and lows of leaving high school, moving on to college, finding their first job, dating, marriage and ultimately starting a family!
So much going on – not to mention a little skin condition called ichthyosis! It is not easy and sometimes you need support from others who really know what you’re going through. That’s where YAWI comes in.
What is the Group?
This group will serve as a support network for all YAWI. We hope to be with you during the good times, the bad times and all those in between. Collectively, we have mountains of advice, experience and information.
But ichthyosis, as you know, is rare. Not too many people have it and without some sort of database, finding a fellow YAWI is like finding a needle in a haystack. I live in New York City, home to over 8 million people. Of those 8 million people, 40 people have lamellar ichthyosis. Forty people! One out of 200,000! I consider myself social BUT it will take me a long time to meet 200,000 people.
Our hope is to keep a database including the following:
- Type of Ichthyosis
- Contact Information
This database will serve as a central source of communication between YAWI. It will be a private list monitored by me and YAWI Group leadership. No one will have access to this list. With this database, we can set up connections. For example:
- Hold YAWI breakouts at the family conference and regional meetings
- Depending on locations of those that join, arrange get-togethers in convenient geographic areas
- Plan conference calls on specific topics (i.e., starting college, job interviews, dating, etc.)
- Develop content for YAWI blog, newsletter column and other YAWI communications
- Create a closed Facebook group to talk and exchange ideas, share concerns
I lived the first 29 years of my life without meeting someone else affected with ichthyosis, so I think it is important to make connections with others who know EXACTLY what you are going through.
What does the future hold?
My hope is that you share your information with us and become involved. This is a tough disease. I have been LIVING with it for 31 years. We all LIVE with it. If you don’t have it, you will never understand the emotional and physical drain that it can be. This YAWI group will allow us to talk to people first hand who are also living with ichthyosis. I hope the YAWI group can allow us to help others and be helped by others.
This is awesome and I want to be involved!
The YAWI group is forming right now. Get in on the ground floor and help jumpstart our future. You’ll find more information and a sign-up form on our YAWI web page.
OUR FIRST YAWI CONFERENCE CALL IS SCHEDULED FOR MONDAY, SEPT. 16th at 8:00 pm EST.
Sign up to find out more!