How did I only discover the existence of FIRST as a grown adult in my 30s? Why did I not grow up knowing the word ichthyosis? What do I do now that I know there is an organization whose sole purpose is to support individuals living with ichthyosis? These are the questions which have led me to writing an article on how I originally discovered the organization FIRST.

I always knew the symptoms of my skin condition. I’ve known how to treat and care for myself, but I was never taught the name ichthyosis. Ichthyosis was not a word used in conversation and only rarely did anyone ever say the word collodion. When they did, I didn’t fully grasp the context or concept. I thought collodion was the name of my ongoing condition, not a specific element of my condition upon birth. Additionally, none of the medical personnel I shared the word with even knew what it meant or how to spell the word.

I grew up treating my condition, but not fully understanding the genetic origin, knowing the name of the type of ichthyosis I had, or if anyone else had the same condition. After proposing to my wife, we began discussing the possibility of having children. This led to a conversation about my skin condition, which is a topic I typically do not speak about in any great depth. These discussions led me to ask a variety of questions, request childhood health records, contact dermatologists I had seen as a child and conduct a vast array of google searches.

It was at this point that I discovered FIRST and realized the name of my condition was ichthyosis. I had never completed a genetic screening to identify the type of ichthyosis I have. Yet, without doing so, I wouldn’t be able to determine if my condition would be passed onto children. After learning more about FIRST and adding myself to the ichthyosis registry, I completed a private genetic test and discovered that I have ARCI, or as some medical personal call it, CIE.

Being armed with the name and specific type of ichthyosis it allows me to keep up to date with modern research, trials, treatments and communicate with fellow individuals living with ichthyosis. FIRST was the only organization that has allowed me to connect with members of society that understand what I have lived with, what I lived through daily and will continue to struggle with for my entire life.

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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