For Ichthyosis Awareness Month (IAM), we are delighted to be sharing an insightful post from our “Guest Dad Blogger” and long-time FIRST member, Mark Klafter, father of Adam Klafter, affected with Epidermolytic Ichthyosis (formerly known as EHK). In this post, Mark shares his thoughts on deciding where and when ichthyosis awareness raising might have the most far-reaching impact.
Awareness Begins At Home #IchthyosisAwarenessMonth
Ichthyosis Awareness Month is now upon us. If you didn’t know that, you’re not connected to FIRST in enough ways! Many people struggle with what to do during this time. How do I raise awareness? Do I need to raise awareness? The answers are “simply,” and “yes.” But don’t worry, I’m not here to preach to anyone about what they “must” do.
I’m sure everyone would agree, ichthyosis is a very personal thing. For many, they like it to even be a private family matter. I get that. And far be it from me to tell anyone how to live their life. Like everything else ichthyosis-related, skin care, fundraising, etc., awareness is something you need to do in your own way, and at your own speed. Also, in my opinion, awareness begins at home and with those closest to your family and community. They are the ones who have the most interest in trying to understand, and perhaps educate others.
However, before you can educate someone else, you have to first understand what you’re dealing with. Could you go out there to anyone and simply say “it’s a genetic skin condition,” or, “my body doesn’t shed skin as quickly as it should,” or, “my body over-produces skin cells?” Of course you could. But would you really convey to someone what ichthyosis really is all about? Would they have empathy for you or your child’s situation? Would they be compelled to help another person understand ichthyosis, or perhaps support FIRST with a donation? The answer is, likely, no.
Ichthyosis is complicated — period. I’ve spent the last 13 years continuously trying to learn about and understand my son’s EHK –taking the science of it and converting it into an analogy or example that any nonmedical person can understand. Only recently have I begun to feel like I’m at the point where I can give someone that clear understanding of what causes his skin to look and behaves like it does; what the complications in his life are because of ichthyosis. And, after over a decade of practice, I can do it in 2 minutes or less! Don’t worry, you’ll get there.
Once you feel you understand the condition, and can clearly communicate it, start with other family members, and your closest of friends. These are the people you or your children will come in contact with more than anyone else. Their level of understanding and “awareness” are critical. Again, this is where awareness begins, at home.
Once you’ve accomplished that, you’re ready to go tackle the world — should you choose to. Perhaps try and schedule some time at your child’s school to go in and talk to his/her science class. Maybe you can post an ichthyosis “fun fact” every day on social media. Perhaps write a brief story/article for your neighborhood, church, or school newsletter. Or maybe even you go BIG and contact the local media to see if anyone will publish a story on ichthyosis, and your family. Whatever you choose, it has to be what you’re comfortable doing. That’s when self-advocacy truly resonates with others, and unquestionably makes a difference.
Happy Ichthyosis Awareness Month!