I have attended four FIRST National conferences, with my parents in the ‘90s and now my own family. Every single time I learn something new, make new friends, and leave the conference bursting with energy and hope for the future of our rare disease. If you or a family member is affected with ichthyosis or a related skin type, this is an absolute “don’t miss” event. Here’s why…
1) Meet the Medical Experts – The National Conference offers the rare opportunity to learn from ichthyosis & related skin type experts. Experts. There are only a few in the country, and you can meet them, one-on-one! Free, fifteen minute clinical appointments are even available!
2) Surround Yourself with Affected Families & Individuals – For once, ichthyosis is the majority. You’ll see people with your type of ichthyosis in the elevator and in the halls. You’ll see skin flakes on chairs. You’ll see people putting lotion on everywhere. Kids will hold hands with others and feel comfortable. Through casual encounters, formal presentations, and in-depth conversations, you will feel it and see it: you are not alone. This, by itself, is a life-changing experience.
3) Make Friends that Last a Lifetime – Dealing with ichthyosis can be very isolating, not only for those affected, but for parents of affected children. Many parents feel overwhelmed with everything that comes along with an ichthyosis diagnosis, and the “ichthyosis family” is a support network that runs far and wide. At the conference you will no doubt spark connections for a lifetime.
4) Get ideas – Did you know that some people use a Dremel drill for their feet? That sleeping with surgical gloves can help your cream work? That UV rays are good for some types of ichthyosis but not for others? The wealth of information at the conference is always astounding – both medical and firsthand trial-and-error. Some of the most effective treatments I’ve found have been from suggestions at the conference.
5) Stay In-the-Know – You’ll hear all the latest in research, from the scientists themselves! You’ll learn what’s new with FIRST, and how to get involved. Plus, you’ll find answers to issues like making special accommodations at school, how to spot an infection, or finding the best way to explain ichthyosis to a classroom or employer.
6) See Your Future – The conference offers the rare opportunity to talk with those ahead of your life stage. New parents with affected toddlers can meet happy and adjusted teens with ichthyosis. Young adults can talk with 30-somethings about what it’s like to get a tattoo, get married, or nurse a baby while having ichthyosis. Adults can visit with seniors and find out what issues and solutions they’ve found for aging with ichthyosis.
7) Inspire Others – Ichthyosis makes for people of dignity, generosity, and perseverance. Sharing your strength with other new parents, other affected people, and even the dermatologists can be empowering to you. I’ll never forget how strong I felt when I was able to lift up a room full of parents just by sharing my own story. I am proud to know I have lessened the burden of others with ichthyosis.
8) Have fun! – From dawn till dusk, and beyond, the positive energy of the conference is contagious. We smile nearly the whole time we are there. The sight of the children playing together in the childcare room makes me tear up with joy. It wraps up with a Saturday night dance party and talent show! Plus, it’s San Diego. The beach, city, and nature are all right at our feet. Sign up for the FIRST San-Diego bus tour! A great opportunity to see the city and have fun with new friends.
9) Meet the FIRST staff – Did you know Jean Pickford has been with FIRST for more than 15 years? FIRST is more than just an anonymous funding source for ichthyosis resources, or an anonymous author of “fact sheets”. You’ll have a chance to get to know the FIRST staff, and to encourage them in the work they’re doing.
10) Score Free Samples – Generous sponsors and companies that are working on products just for ichthyosis contribute massive amounts of freebies—many of them are full size. The “swag bag” you’ll receive is guaranteed to make you feel like a red carpet VIP, and give you a few more things to try in your treatment.
-Denise Eiser, FIRST Member