"Kacy" -- Age: 40 Ellicott City, MD
What type of ichthyosis are you affected with? EHK- KRT1 palmoplantar
What treatments do you use for your ichthyosis? I have a skin regime that consists of using scouring pads, a dremel drill and over the counter lotions (Eucerin, St Ives, Lubriderm, shea butter) supplemented with glycerin as my current treatment. For my hair I use Tea Tree and Redkin products on my scalp. I go once a month to my salon for a deep scalp cleansing. Doing this keeps my scalp looking good. I have also tried facials at the salon, but using ST Ives apricot scrub is just as effective and much more affordable.
How have these treatments changed over your lifetime, and has your ichthyosis itself changed? As a child my grandmother made salves or lotions using a variety of ingredients to give me comfort. And I spent lots of time in the bathtub, often screaming over the scrubbing I was getting. Now I shower daily and only take a bath once or twice a week. I now find I must change up what I use on my skin as most things seem to lose effectiveness if used to long. As far as my skin itself, it is much different now then when I was a child. As a child I had thicker, darker more noticeable scaling. My skin was also more fragile when I was younger. Now with my regimen I am able to keep the scaling better controlled. I now seem to have more redness than when I was younger. It may just be that it is more noticeable due to less scaling. I no longer get skin tears as easily as I did as a child. That also could be due to not doing as many tomboy activities. LOL!!!
Tell us about the challenges you face, at this decade of your life dealing with ichthyosis. Lately, I have been dealing with constrictive bands on my fingers. This has caused me to experience numerous surgeries to place skin grafts in order to relieve pain. Most of the other things I have been experiencing have been the same throughout my whole life. For instance, weather changes in my skin are still a nuisance, whole body peels after I have been sick, cracking on my hands and feet and getting overheated due to not sweating well.
What seems important now that that you are older compared with what seemed important when you are younger? The things that are important to me now are my marriage, raising my children, growing in my faith, and loving others. As a child I was worried about fitting in and belonging. As I have grown up I have realized that I have ichthyosis it doesn't have me. It's not what makes me who I am. It is a part of me that people I meet will either accept or not.
If you knew "then" what you know "now" what would you do different? For the most part, I don't think there is anything I would change. I think all the things I have been through have made me the person I am today. The main thing that comes to my mind though is the fact that as a child I was afraid of people staring at me. I would try to do as little as possible to draw attention to myself. As I have grown older I have learned that getting people's attention is what shows people I am just like them. As I have grown older I have developed a very outspoken personality. I am usually the first one to say "Hi" and I feel this makes me more approachable.
What hopes do you have for the future, taking your condition into consideration? I hope research continues for the whole ichthyosis family. I hope better treatments and of course a cure is found.
What advice would you have for others affected? Wow, where to start?? First off, be proud of who you are. You were perfectly and purposefully made as who you are. Your skin is just a part of your identity not all of it. Take it upon yourself to teach all you meet something about your skin. Be easy on yourself because there will be days you are frustrated and just plain sick of the EXTRA we must do because of our skin. It's ok to feel this way, but try not to stay in this place long. Be creative and always will to try new things for your skin. And most importantly, reach out to others that are affected. Share your ideas, experiences and personal care. It is such a great feeling to talk to someone who knows exactly what you are going through. Many of us have had periods of our live where we have felt all alone and needed someone to talk to.
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