Wednesday, May 1, 2013

May is Ichthyosis Awareness Month!!

Ich-thy-o-sis: noun- a congenital skin condition that causes the epidermis, to become dry and rough like fish scales.
Ashlynne's type of Ichthyosis is called "Ichthyosis en Confetti"
This beautiful, smiling little girl is one of the many faces of Ichthyosis

In honor of May being Ichthyosis Awareness Month, I am going to do my part and share some knowledge, and tell a little more of A's story.
  Let me start with telling you some of what we deal with, having someone in our family that is affected with Ichthyosis.  A's skin does not hydrate itself, or retain moisture as typical skin does. Her skin, very red in appearance, will crack and bleed if moisturizer is not applied frequently. It also reproduces at an abnormally fast rate (about 14 times faster than the typical person if I remember correctly), which causes build up and stiffness of her skin, making bending and moving sometimes difficult. She does not sweat, making the heat very dangerous for her. Her bath routine takes about 1 1/2 - 2 hours a night, depending on how built up her skin has gotten throughout the day.  This routine consists of a long soak, to soften the skin, a good full body scrub, and ointments and lotions applied head to toe, and finishing off with wrapping the arms, legs, and feet in Saran Wrap so that the moisture is retained all night (hopefully preventing cracking). Some nights other things are added to the routine, such as "de-scaling" the scalp, and deep cleaning of the ears, because skin builds up in these places as well.  Some days, this can be exhausting for both her, and I.  She has dermatology appointment, ENT appointments, ophthalmology appointments, appointments with her general doctor, physical therapy, and we have also started her seeing a therapist so she has someone to talk to about being "different". The amount of appointments can be overwhelming as well.
  On January 14, 2003, I heard a word for the first time that would change the rest of my life... Ichthyosis. Ashlynne was born at 12:25 pm this day, and was loaded into a helicopter and on her way to Topeka, KS by 3:00 that afternoon, and the word that kept ringing in my ears was one I had a hard time even pronouncing, let alone understanding. The worst thing a parent of a sick child can do is get on the Internet to research, but I did this, and slowly it seemed as if my dreams for A that I had before she was born slowly started dying, and were slowly being replaced with things that my other friends that were parents would never understand. My dreams started to consist of her ever walking (which she finally did at 2 1/2, yay Ashlynne!!), of her making it through a night without itching so bad that she had scratched herself bloody, of her being able to run and keep up with the other kids at the park, of her having friends that would truly accept her, and her limitations, and of us being able to have a simple outing to Wal-Mart without stares and whispers.  I had to accept that my little girl was never going to play softball like I did, wouldn't be able to spend all summer long playing outside in the sun, would honestly never really be able to have a care free day, due to all of the care that her skin requires. It was, in a sorts, the death of a dream, of her having a "normal" childhood.
  But as soon as I allowed myself to grieve the loss of these dreams, and I picked myself up and did a mental slap in the face, I decided to get pro-active. I decided for us, "normal" was just going to have to be a bit different. I got on the Foundation of Ichthyosis and Related Skin Types website, and started researching anything and everything I could to try to make life a little easier for my little girl. I joined Facebook groups, registered with FIRST, and started reaching out to other people affected by this seemingly devastating disease. And by doing this, I discovered a whole network of these amazing people that could finally truly say that they knew and understood what I was going through.  I connected with other moms, young adults, and saw other kids living with Ichthyosis that were doing just that... Living!

Ashlynne, in yellow, with our friend Jordan, whom she nicknamed "Sister Salmon", in Denver, CO, June 2012

After the smoke cleared, I made up my mind to not be sad anymore. I mean, don't get me wrong, A and I both still have our days. But I have started to realize, that if looked at in another light, Ashlynne's Ichthyosis could in some ways be considered a blessing. I have learned a TON!  I have met and connected with AMAZING people that I never would have met otherwise who have inspired me. And I have helped other moms who have had questions, and sometimes just needed a shoulder to cry on.  Some of these people have come to be extended family for us. I have learned to love and embrace the things that Ashlynne CAN do rather than be sad about the things that she CAN'T do. And believe me, she can do anything she puts her mind to!
  There are amazing doctors, from general practitioners, to dermatologists, to geneticists, entire TEAMS of doctors that have dedicated their lives to researching Ichthyosis in hopes of one day finding a cure.  There are determined mother, fathers, and other friends and family members that work tirelessly putting together fund raisers to help fund this research, among many other things. And I have faith in them, that one day, if we all keep working together, there will be a cure.
  In honor of Ichthyosis Awareness month, my husband and I, along with FIRST and the Kansas City Royals, have teamed up to host the first annual "Ichthyosis Day at the K". We have sold 200 tickets (we sold out!!!) to family and friends, that will all be there for a fun day at the ball park, and also in hopes of raising awareness about Ichthyosis. We are very excited to say that Jordan will be flying in to Kansas to spend that very special day with us!

  If you are interested in learning more about ichthyosis, and FIRST and the research and programs they are involved in, or if you are interested in making a donation, you can visit the FIRST website for additional information.

1 comment:

  1. Cora, not only are you and Ashlynne beautiful on the inside, but the outside to! Congratulations on the beginnings to a beautiful path of awareness to Ichthyosis. I hope that one day through your dedication, awareness and compassion your dreams come true. Much love, Scott & Steph


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