I met Hunter several years ago at a F.I.R.S.T. conference Foundation for Ichthyosis & Related Skin Types, Inc.. I believe she was 13 or 14 when we met. She was poised, confident, laughed, was funny, smart, beautiful and amazing. And clearly she still is. Most of you dont know that I have Ichthyosis as well, though not the form that Hunter is diagnosed with. I have a list of friends, some with children who are diagnosed, others who are themselves affected. Tune into Radio Carly aka Carly Findley, from Australia, speaks continually about life with Ichthyosis as well as discrimination. I have met individuals from Africa, Denmark, the Netherlands, and many here in the States. All incredibly brave and poised men and women, who are constant examples to me. I have kept my condition private for the most part, but will not shy from explaining what is wrong, when asked. Most have never asked, out of professional curtsey I suppose. And most of the time it is not an issue. My form of ichthyosis is cosmetically a milder form, but certainly not without the same risks that Hunters and others have to face. I know several others in the State of Utah, that have Ichthyosis. They are discriminated against all the time. One was denied a job she could physically do, but her would be co-workers were ignorant, to put it kindly. I was accused once of not doing enough volunteer work and openly displaying what I have done. I speak to moms like me, I help other teen girls that are facing what I faced as a teen. It is a private battle that the world has no need to know, nor do I need applause that I do it. Most here only know that I fight Common Core and voice my political opinions. This is not all I do, clearly. Moral of the story-- Love everyone, for you know not their struggles in plain sight, or behind closed doors. We are all unique with our challenges, and yet we are all brothers and sisters under Heaven. Im proud of you, Hunter! You did great!
Posted on: Wed, 16 Jul 2014 00:14:14 +0000
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