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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

Read more about us and this blog...

Here's our summary of our best and most important posts of 2012.

Life with Harlequin Ichthyosis: High School

Hunter is back with us today, sharing her experiences in high school.

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After my middle school experience, I went into high school very guarded and careful. I always kept a barrier up against new people because I was afraid of having them bully me. Ninth grade year was by far the hardest of all my high school years. I dealt with some of the same kind of ignorance as in middle school. Admittedly, I did tend to over react sometimes. I was so used to all the bullying that I was looking for it. Whenever I saw something that might have been any kind of harassment, I would go into high gear. Part of it had to do with the way my peers saw me but part of it also was a result of how I came off to everyone else.

Its understandable why I was acting the way I was but I did not consider how my other classmates interpreted my actions. What was open but careful to me came off hard and rude to everyone else. I made the mistake of holding everything very close to the chest and I took every incident as a personal attack. Given my previous school experiences, it makes sense why but that was no excuse. I had to learn that other people did not intend to be mean and that if I let my guard down, I could make friends.

Tenth grade started out the same as ninth because I was still afraid to let my guard down. I had issues with some of the same kids as the year before but those soon died off. I started letting things roll of my back and I started to open up to people in a way that they were not used to. At times I got scared of the way they treated me. I was not sure if it was sincere friendship or just a trick to mock me. I had to get used to the idea that even though these kids may have had an issue with my skin, it didn’t mean that they had an issue with me.


High school has been a time for lots of revelations on my part.  I thought that I understood the experience of interacting with me from the other person’s perspective, but it turned out I really knew very little about how I appeared to others. It took some time, but towards the end of tenth grade, I understood that I had to be more open and forgiving of my peers. They had never met someone like me before and I could not reasonably expect them to just take to me without a little hesitation.

Going into eleventh grade, I was much more open and I was pleasantly surprised by how my classmates responded. At one point,  we were working on the fall show and there were some issues with some of my cast members over handling props that I was assigned to manage. To my surprise, a few of the girls that had given me problems in previous years were now defending me. They were on my side and sticking up for me. Then, when I lost my mom, those same girls offered themselves as lines of support. As the year went on, we got used to each other and are now good friends.

Some other things that were interesting to deal with were relationships. In ninth grade I had an experience with someone I liked. He basically said that he did not want to date someone with scaly skin. After that I was very hesitant about making relationships. I was afraid of them rejecting me because of my skin. I did have a few small relationships in eleventh grade but nothing that lasted. Not because of any skin issues, things just didn’t work. Recently though, I have been with someone who is very open with me. He has no problem with my skin. A fear that I have always had with friends, and especially relationships, is whether they are looking at me or at my skin. At times I still struggle with that. But I have learned that if I make the first move and tell the other person that I am willing to do what I can to make it more comfortable for them, things go much smoother because they know that I want them to see past it.

High school has been simultaneously one of the roughest and best experiences of my life so far. So, what’s next, right? Well looking at colleges is a grueling process. I have to think about things that normal students don’t. For example, I need to have a bath tub instead of a shower and I need to have a separate place to do my laundry. These are challenges that I am still dealing with and I don’t really have answers yet. But if I know anything, its that this next experience will be no less enlightening than high school has been.

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We are not doctors or medical professionals. A doctor or nurse looking to confirm or consult on a diagnosis of harlequin ichthyosis should immediately contact FIRST, the Foundation for Ichthyosis and Related Skin Types because time is of the essence and specialized expertise is critical in caring for a newborn with harlequin ichthyosis.

Part 1: Life with harlequin ichthyosis: The basic science behind harlequin ichthyosis
Part 2: Life with harlequin ichthyosis: Newborn Surprise
Part 3: Life with harlequin ichthoysis: In the NICU
Part 4: Life with harlequin ichthoysis: Going Home
Part 5: Life with harlequin ichthoysis: Ups and Downs in the First Year
Part 6: Life with harlequin ichthoysis: Toddler years
Part 7: Life with harlequin ichthoysis: Starting Elementary School
Part 8: Life with harlequin ichthoysis: The Downs of Middle School
Part 9: Life with harlequin ichthoysis: The Ups of High School  <–You Are Here
Part 10: Life with harlequin ichthyosis: Moving Past School
Part 11: Life with harlequin ichthyosis: A Harlequin Pregnancy

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