Perspective: Mother and daughter share how ichthyosis has affected them

Alyssa, 15, and her mother, Krista, reflect on their relationship and experiences with Alyssa’s ichthyosis

From Alyssa –

Hi, my name is Alyssa, I’m 14 (15 in April), and I have EI.  I have not let my skin condition stop me from doing everything that I wanna do.  I have been an All-Star Cheerleader for 10 years, a school cheerleader for going on 2 years, I have raced four-wheelers and my junior dragster since I was 2, and I have also ran track since the 3rd grade. 

I have not let my skin condition define me and take over my life.  That is not to say that I never feel insecure and embarrassed to have EI.  I constantly have thoughts about my skin.  Is it noticeable? Are people making fun of me? Why does it look this way? Why me? I ask myself that last question a lot.  Why me?  Why did I have to be born this way?  Why did God choose me to be born with this condition? Why do I have to look like this?  And I know everyone who has a skin condition of any kind has asked themselves at least one of these questions at one point in their lives.

It is hard to grow up and be different than everyone else, to not look like everyone else, and to have people judge you for something you can’t change. But what you can change is your confidence.  It’s not easy to be confident; people will always try to bring you down and make you feel less than, just because you are different. But being different is amazing! 

I have learned to never let my skin define me and tell me I can’t do something. It’s hard sometimes to put those bad thoughts behind me and be confident, but being comfortable in my skin feels amazing! I know that even with my skin condition I can do anything or any sport I choose. I hope this has helped and lets you know that just because you have a skin condition doesn’t mean you can’t be happy. So do that sport! Wear what you wanna wear! And be confident in your skin!

From Krista-

As any parent, you just want your child to be born healthy, 10 fingers and 10 toes.  Alyssa was born healthy, just a newborn rash they told us after she was born.  A week later it was eczema.  At nine months after a biopsy, it was Epidermolytic Hyperkeratosis.  Our hearts crushed as we realized Alyssa would have this forever; no cure, possible embarrassment being looked at different, could she do sports, selective on clothing, prom dresses, and even wedding dresses.  We pulled ourselves together and decided she wouldn’t be different, we would beat this and try to find a cure or something to make her feel like she was accepted.

Doctors and more doctors as we attended a Dermatology Convention in Tulsa, OK, each walking through looking at her as she was some kind of lab rat.  We were hoping for someone that could help, but ended up with only 2 doctors that had seen her condition and told us to be thankful it wasn’t that bad.  Not the answer we were looking for.  We tried so many lotions and creams that she would scream at the sight of any medicine thinking it was for her skin.

At some point acceptance is all you can have. Children grow and learn to cope. We have always had the understanding that if you want to try a sport you have to finish the season, no quitting. In t-ball we thought she was going to pass out in the field because she couldn’t regulate her temperature, but we finished the season. We race four-wheelers and decided she could try racing her little four-wheeler, this started a passion to be competitive. She found her love for cheerleading and tumbling, and then track. I was scared to death of her overheating, but she was taking control and she managed on her own and competed. Currently Alyssa has won the Junior class for 3 years in a row racing her junior dragster.  Her competitive cheer team will be attending Nationals again this May, like they have done for several years now.  Alyssa is also on the Varsity High School track team.

I believe she takes control of her skin condition like a competition. She wants to know if she can beat it.  We have found a dermatologist in Dallas that she loves and is on a high dose of Acitretin and her skin looks amazing from what we started with.  Alyssa is finally comfortable in her skin, of course we still have breakdowns.  She is a total teenager trying on 10 different outfits, picking out prom dresses that shows some of her worst spots but she isn’t as embarrassed like she once was.  She sets high goals for herself, and competes to complete them. Alyssa has showed us that in this cruel world where not every child is taught to not make fun of another person, and even adults don’t know better to make fun of a child, that she has the right to stand up for herself. She is a strong-willed, very smart and beautiful person and she is becoming herself and not letting her skin control her. I hope she will always compete to take care of it and herself.

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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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