After writing the last entry, I collapsed in bed to get a whole…um….five hours of sleep before my alarm went off at 6:15. By 7, I was back in the clinic, helping families get to their appointments. This morning was even more challenging than yesterday. Many flights came in during the wee hours of the night, resulting in tired, hungry kids and late appointments. Despite the chaos (relative to yesterday), we still managed to get done by 10:30.
Unfortunately, I missed most of the keynote speaker’s address, who was Rick Giudotti, Rick Giudotti is the founder of Positive Exposure, a non-profit devoted to normalizing people with visible disabilities in the media as well as encouraging positive self-esteem in affected people. My friend Carly has talked extensively about him and has also had a photo session with him.
Rick is amazing. One of the things he said, and we think this is really important, is that our skin is not all there is to us. And doctor photos, with the black bar across the eyes and close-ups of arms and legs, are really dehumanizing. We are people first, and when we realize that, we have empowered ourselves.
After the keynote, we all wandered up to different rooms to talk about dealing with the different varieties of ichthyosis. I ended up in the “Ultra-rare varieties” room with two other Confetti families, a couple Sjogren-Larsson families, someone with Darier’s a family with EKV and a family whose daughter had CHILD syndrome. It was great to have such a small group. We got to talk with Dr. Milstone and Dr. Rizzo about the future of research and real treatments and cures. We talked about how hard it is to get drugs through the FDA approval process, how orphan drugs work, what differences there are between metabolic drugs, siRNAs, and retinoids.
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