23 May 2015

Ichthyosis Awareness Month: Anna and Genevieve's story: "But most days are our silver linings."

Anna is such an amazing mother - I really admire the way she discusses issues about Ichthyosis. She has told me of the judgment she has received about her daughter's skin because people just don't understand Ichthyosis. We've become great friends online. 

Her daughter Genevieve has Epidermolytic Hyperkeratosis.

Meet Anna and Genevieve. 

"Hello from the wonderful state of Minnesota! My name is Anna, and I am the mother to an amazing 6 year old girl named Genevieve. She is your average 6 year old girl. She loves Taylor Swift, dancing, playing dress up, riding her bike and just having a good time. She is funny, always happy, and she is super smart (making honor roll the entire year of Kindergarten even!). She loves to build forts for her and her little brother to climb around and pretend inside, and has a very active imagination. Just like every other little girl right now, she loves Disney Frozen and wants to be just like Elsa. There is one thing that people tend to notice first about her though, her skin. Genevieve was born with Ichthyosis. The reason I waited to tell you that though, is because that is just a tiny little piece of who she is. She is so much more than her skin condition diagnosis.

Genevieve was diagnosed at 6 days old with Epidermolytic Hyperkeratosis. This causes her skin to reproduce roughly 300x faster than normal skin. It seems like no matter how much we exfoliate, it is never enough to keep it all to a minimum. We have been told that the amount of skin she sheds overnight, is equivalent to the amount of skin a person with normal skin will shed in 2 weeks. She has also PPK involvement, causing her palms and soles to be very thick. With the thickness comes pain, lots of it. Genevieve’s body cannot sweat enough to cool her body temperature, due to all the buildup of excess skin… causing her to overheat very easily. The skin on her scalp can grow super thick and basically become like a glue substance, gluing her hair to her head. Or even flaking off, and becoming stuck in her hair.

Almost every single day, Ichthyosis presents us with a new challenge with her skin condition, whether it is overheating, or a blister we can’t figure out why it formed, or if we exfoliated for too long in one spot.
Every day is different from the day before. Some days we are sad about having a child with Ichthyosis, some days just plain angry. But most days, are our silver linings. When you see her smile, when you see her happy and playing and living like any other 6 year old, ichthyosis becomes so minor in our lives. She is here with us. She is happy. She is healthy. She is amazing. The extra-long baths, special shampoos and lotion hand prints all over our house have easily become our normal. Ichthyosis is just another normal. When a challenge arises, we face it head on and take care of it, without a second thought. When she was first diagnosed, we were given the advice to just continue our lives as we would if she had healthy skin. So we try our best to always remember that Genevieve has ichthyosis…
Ichthyosis does not have her."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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