It’s not often that a CEO reaches out to you and wants to meet up for coffee. So when the National Eczema Association CEO, Julie Block reached out to me, I was elated.
On Sunday, July 30, I had the pleasure of meeting up with Julie. She flew to Manhattan from the San Francisco area for a conference. After an exchange of warm greetings and settling down with a cup of coffee, we got down to business.
Julie asked me how I heard about the NEA. Sadly, I honestly didn’t quite remember. However, I noticed that within recent years the NEA has been gaining more notoriety. It was founded in 1988 by atopic dermatitis/eczema patients, nurses, physicians and others. The non-profit was formed to create an atmosphere to provide emotional support, continuous research, and to raise awareness about the skin condition.
The ‘West Coast Gal,’ as Julie described herself, had a very vivacious personality. She grew up in the Seattle area but now resides in the Bay Area. During college she Majored in Anthropology, Health, Science and Women’s Studies. She’s always had a passion for non-profits. So when the opportunity to work for NEA came about, she couldn’t pass it up.
Curious about the current market drugs, I asked Julie what’s the latest in eczema treatments. As we all know Dupixent has been making waves amongst the eczema community. This ‘miracle drug’ has vastly improved those suffering with moderate to severe eczema, as you can see with a quick google search. Julie asked if I thought about taking this medication, control my eczema…
Which brings me to my next topic. Steroids vs. TSW (Topical Steroid Withdrawal)
A highly HIGHLY controversial topic amongst the eczema community. There are those that believe if you are properly educated, you can take steroids in small to moderate doses. Others swear by never taking steroids again and have gone the TSW route.
Before I state my opinion, I ABSOLUTELY LOVE that we as a community are discussing this. Regardless of your experience or personal beliefs, the fact that people are talking about different solutions is a win-win!
I expressed to Julie that I’ve acted as a ‘guinea pig’ for years. I’ve taken everything under the sun, and them some. Elidel, Protopic, Prednisone, Cortisone Cream, Allergy Patch Test Work (the one where you can’t shower as they test for 100 different allergies) and Benadryl, are just some of the medications I tried. I told her that I’m at a point where I needed to do a 180 and change my lifestyle. I started eating healthier and took myself off of steroids.
Being the absolutely gracious and understanding woman that she is, Julie took it all in. In a respectful manner, she educated me that day. She told me that in the past many physicians/doctors/dermatologist didn’t have the knowledge about eczema that they currently do. Science is constantly changing and evolving. More pharmaceutical companies are investing in new therapies. As technology advances and more is known about the skin condition, it will allow others who are debating steroids to research new options.
Another topic that we touched upon was the social aspect of eczema. Having moderate to severe eczema affects your life EVERY SINGLE DAY! Which can cause depression, or other mental health conditions. This was important to address because it tends to be slightly brushed over. I mentioned that I’m constantly reading stories about kids being bullied for their skin. Or adults having to forgo work due to their skin, leaving them in a depressed like state.
Having the opportunity to talk to Julie was awe-inspiring. We turned what was supposed to be a thirty-minute convo into a hour and a half, talking about so many different topics relating to eczema.
A conversation that will continue October 1st 2017, at the Eczema One-Day Forum in New York at Mt. Sinai Hess Center for Science and Medicine.
** For those that are in the NYC area this is a great opportunity to meet others with this eczema and speak with doctors and medical specials about any questions and concerns you may have.