Find Us On Facebook
Follow Us On Twitter
"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

Read more about us and this blog...

Here's our summary of our best and most important posts of 2012.

Recent Comments

Why I Am Attending the FIRST Regional Conference

We have a lot of new blog projects in the works, but I wanted to take a few moments today to write about why I am excited to be attending the FIRST Regional Conference (Patient Support Forum) in Dallas, Texas on June 8. (It’s still not too late to register.)

Here’s what I think the FIRST regional conferences offer:

1. An opportunity to learn more about ichthyosis from medical experts. The headline speaker is Dr. Moise Levy, a member of FIRST’s Medical and Scientific Advisory Board. Moise is the Physician-in-Chief at Dell Children’s Medical Center in Austin. Moise is bringing along two of his physician colleagues, too.

I did a quick PubMed search, and Moise is listed as a co-author on 39 articles, including a recent article from “Dermatologic Therapy” published in February 2013, “Complications of ichthyosis beyond the skin“. The article discusses quality of life, growth failure, eye and ear problems.

2. An opportunity to meet other people affected with ichthyosis, and to learn from their experiences. Learning about the underlying science and medical issues is very important, but these conferences let the attendees learn from each other about their common experiences. After the lecture-style presentations, the conferences break out into smaller, less-formal discussion groups where people can share their experiences.

At recent FIRST conferences, my family shared our experiences with basic skin care tips, from Aquaphor and other lotions to Cling Wrap to our use of nail files and a Dremel. At the very first conference we attended, we learned a lot from other attendees about accommodations at school and cooling vests. It’s one thing to read about things online, but sometimes in-person show-and-tell can be a lot more fun!

3. An opportunity to ask questions about ichthyosis and get answers. The really nice thing about the smaller regional conferences is that all of the sessions are small enough that there’s enough time for questions and dialog. Some people might be afraid to stand up and ask questions in a session with 100+ people, like the ones at the Family Conference; the smaller regional conferences provide a more intimate setting.

4. An opportunity to make new friends. Dealing with ichthyosis can be very isolating, especially for parents dealing with newborn children. Many parents feel overwhelmed — not just coming home from the NICU, but dealing with everything that comes along with skin care, infections, injuries, school issues, social issues, and everything else. The “ichthyosis family” runs wide and far; we may come from vastly different backgrounds but we do share this one thing — our skin — in common. And that’s often enough to form the spark of lasting connections.

FIRST conferences provide a vehicle for meeting other people with these common connections. And it’s an important way for the community to show our newest members, “You are not alone in this experience.”

5. An opportunity for parents of affected children to talk to affected adults. Related to the “you are not alone” message, I think it’s a great opportunity for parents of affected children to meet and talk to affected adults. The affected adults certainly aren’t perfect, but our own life experiences can help parents of young children understand that their skin doesn’t define who they are. And that their children can have the same opportunities as others to grow up, to love and be loved, and be successful in life.

6. An opportunity to meet the FIRST staff. FIRST is more than just an anonymous funding source for ichthyosis resource, or an anonymous author of “fact sheets”. FIRST conferences provide a great opportunity to get to know the FIRST staff a little better, and to encourage them in the work they’re doing.

Readers, I’m sure I’ve missed a lot of other benefits of attending FIRST conferences. What else would you tell someone thinking about attending one of these conferences?

EDIT 1:30 PM: I can’t believe I forgot about the free samples.

1 comment to Why I Am Attending the FIRST Regional Conference

  • Getu,Teshome kinde

    OF course the reasons are clear but abig question come to OUR mind that how could be facilitated to thos of us living out side US?IT is such agolden opportunity specially for our contenent which people donot have the knowledge about ichthyosis.

Leave a Reply

  

  

  

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>