Living with the Rare Skin Disease of Ichthyosis, July 27, 2014 Guest Post by Kitty (Post #609)

Hi, I’m Kitty. But some times I’m better known as Mawmie (grandmother) to two little girls who are quite possibly the most beautiful children ever created. Addison is 7 & 1/2 (right top) and JoElla is almost 4 (right bottom). They inherited a skin disorder called ichthyosis (ick-thee-oh-siss) from my stun-in-law – their daddy. Ichthyosis is not contagious, but I can assure you that once you’ve experienced our granddaughters, you will be infected with the joy they bring to your life.

There are over 25 different types of ichthyosis; some so severe that, if it there isn’t a diagnosis immediately at birth, it can be fatal. Our little princesses and their daddy have a less severe type – erythrokeratoderma variablis (EKV) http://firstskinfoundation.org/content.cfm/Ichthyosis/Erythrokeratoderma-Variablis-EKV/page_id/546 .

Their bodies produce as many skin cells in one day that you and I would produce in about fourteen days. This makes their skin thick, sometimes causing fissures in their skin that makes them lose hydration easily. Because their skin doesn’t work properly, they cannot sweat, which can cause their temperature to soar. Keeping their temperature safe and keeping them hydrated is important to their health.

But the hardest thing, from my point of view, about ichthyosis is how people react to their visible difference. Staring is rude and hurtful. We would rather people just ask honest questions in a polite way. When that happens, we can inform and educate, making the curious more comfortable. People are generally afraid of something they know nothing about, so we love giving information about ichthyosis.

It is always good to know you have someone in your corner. So we feel so blessed to be part of an organization that is the go to resource for all things ichthyosis – FIRST (Foundation for Ichthyosis and Related Skin Types). There is so much information, help and support from the good people there.

Because ichthyosis is so rare, there is very little research. There just isn’t a lot of money designated to rare disease research, so many members of FIRST have grass roots fund raising events. My husband and I sponsored a benefit concert a couple years ago to raise money for FIRST. A local Chick-Fil-A also let us host a “spirit night” where a percentage of the meal price was donated to FIRST.

But this year I did something a little different. I made quite a few aprons back in the winter before my little sewing business picked up speed during prom / wedding season. I decided to offer those aprons for auction during the month of May for IAM (ichthyosis awareness month) (right). All of the aprons were one of a kind; many made from vintage fabrics; most made from the pattern of my husband’s grandmother’s aprons. I had so much fun making them, taking bids and then posting each apron in the mail to those whose bids were highest. My friend and the heart and soul of this blog, Gratiana, won the bid for one of the aprons. She messaged to me a picture of herself, wearing it. Thanks, Girl Friend!

It makes me feel so good to know that our efforts help inspire and educate others to make our world a better place in which to live. I want our little princesses to feel accepted, respected and courageous. We can do that when we teach others to see them – the whole person, not just their skin.

Please visit the FIRST site and learn more about ichthyosis and all that is being done for those who are affected with ichthyosis. http://firstskinfoundation.org/

While you’re there, you can read a post about our little darlings (right) written by our daughter. http://firstskinfoundation.org/content.cfm/Ichthyosis/Trey-Addison-JoElla-Chesnee-SC-2012/page_id/1153

A big THANK YOU to Gratiana for asking me to share on her blog. Hugs, Sweethaht (said Sargent John Porter style because something absolutely must be said that relates to Richard Armitage ).

P. S. It was my pleasure, Kitty. Thanks for sharing! Hugs & Love! Grati