Becky B., Age: 26 Elmira, New York
What type of ichthyosis are you affected with? Lamellar Ichthyosis
What treatments do you use for your ichthyosis? Creams mostly, Aquaphor® with 10-12% lactic acid, Vaseline® around the eyes with eye pads and a sleeping mask, St.Ives®with aloe lotion, baths, and occasional soaks in the hot tub back home.
How have these treatments changed over your lifetime, and has your ichthyosis itself changed? Over the years my ichthyosis has become more manageable due to my ability to increase acid percentages and care for myself better. As a child I had loving parents who helped me with this, but a child can only take so much. As a child my skin split frequently, was thicker and I was more stiff and uncomfortable. As an adult (now using stronger creams, pumice stones, etc.), I have less restrictions in the cold, dry weather and look much clearer. I will always have restrictions though - not being able to sweat, prone to infection - the trick is figuring out to work with the restrictions not against them.
Tell us about the challenges you face, at this decade of your life dealing with ichthyosis. I think that no matter what decade of life you are in, you always face the challenge of what society wants you to look like. I will never fit into that mold (pretty, perfect skin, nice hair) and that realization is often sad and lonely. Dating is always not fun. To me it all reverts back to the society mold, men wanting a "pretty girl" a "typical girl." Sadly, I haven't dated a lot. I am a firm believer in not settling for less. I often find myself longing to find a companion to snuggle up with however, while I wait to find Mr. Right, I've been able to build myself into a strong self-sufficient woman. I find it important to not dwell too much on the challenges, they can often overwhelm you, even consume you.
What seems important now that that you are older compared with what seemed important when you are younger? During my middle school and high school years I wanted more than anything to fit in and be truly accepted. As an adult I don't focus on that anymore. I'm unique for a reason, and I use that uniqueness and build on that uniqueness everyday. My mother says I "march to the beat of my own drum." I love my beat, as do many others. You just have to listen hard enough to yourself, your wants, your needs, your interests, your quirks, your feelings and find your beat.
If you knew "then" what you know "now" what would you do different? Lots of stuff!!!! I wouldn't have dwelled on trying to fit in so much and to follow what was considered the "norm." I would have just been myself, and who knows maybe in doing so I might have encouraged others to do the same. If I could do it all over again I would take more risks, try more new things and meet more people. In the words of Garth Brooks, "Life is not worth living if you stand outside the fire." I tended to err on the side of caution and do just that. If I knew then what I know now I would have danced everyday in the fire!
What hopes do you have for the future, taking your condition into consideration? I'm a dreamer and a goal setter so I've got lots of hopes. I hope to help others with special needs (particularly children), I hope to become a published children's book author, I hope to one day live on the water and open a small café, I hope to travel extensively with family and friends, I hope to fall in love, I hope to have someone fall in love with me, I hope for a society that focuses more on inner beauty than outer beauty, I hope to inspire others to find inner strength and I hope that my parents will be around to see all of my hopes and dreams come true. Some of the hopes I'm working on to make realities. To me no hope, dream or goal is too little or to big, they all take time and effort and change. Change is always the hardest to face because it is so uncertain, but in the end it often leads to exactly what you were hoping for&sometimes, it even leads to something better than what you could have imagined.
What advice would you have for others affected? Always remember that ichthyosis is a PART of who you are but it isn't WHO you are. Having Ichthyosis doesn't define you, you define yourself. Live.
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