03 May 2015

Ichthyosis Awareness Month - Steph's Story: "Your life is what you make it."

I am so excited to share Stephanie's story for Ichthyosis Awareness Month 2015! I've been her online friend for years, and it's been a delight following her journey. She's given hope to so many patients and parents. Steph's got Harlequin Ichthyosis - the most severe form. I first wrote about her when she gave birth to her first child, and late last year, she gave birth to her second - a little girl.  She's the first known case of a patient with Harlequin Ichthyosis to give birth - which is a huge milestone! The reality of me having a family has become clearer, and I've certainly looked to Steph for reassurance that it can be done.

I really like what Steph writes here - we think along the same lines and have reached the same level of acceptance of our condition. I posted a link to a story about a potential cure for the type of Ichthyosis I have, and here's how she responded, which led me to ask her to expand on her thoughts for this blog post:

"As crazy as it may sound- I have Harlequin Ichthyosis & I wouldn't change a thing. It's made me who I am today. It's made me more accepting of others, stronger & able to laugh at life frequently (sometimes the choices are to laugh or cry).. Sure I have no idea what it's like to live without H.I but I would never want to. It'd make life easier but that's why God made people with Ichthyosis tough as nails! I could see why a parent may find it pretty interesting though! I've learned that being a mommy, you're ALWAYS trying to help your baby avoid pain or any struggles that can be avoided."

You can read Steph's old blog and her new blog and chat with her on Twitter

Meet Stephanie. 

"Everyone is handed adversity in life. No one's journey is easy. It's how they handle it that makes people unique."
~ Kevin Conroy

"Your life is what you make it.

Everyone with Ichthyosis is different. Everyone affected by it has a different opinion... Most people live their life by how they were raised, traditions, beliefs, morals, etc. 

I've been asked many times if a "cure" was invented would I want to take it? My answer? No. 

I was raised believing in an incredible God. I was raised knowing he made me with a purpose. 

"You knit me together in my mothers womb, I praise you because I am fearfully and wonderfully made."
~ Psalms 139:13-14. 
 I've always dealt with people staring, commenting, sometimes being unbelievably rude. I used to get upset and honestly, sometimes I still do. But I was lucky to have a mom who was quick to jump to my defense when I was too little to defend myself or educate people. As I got older she taught me to take up for myself and educate others the best way I could.

When I think about it, I've never been interested in a "cure". After all, I'm not sick. When I hear the word "cure" I think of someone who is sick or dying. I do have a skin disorder, it happens to affect more than just my outer appearance. But I'm not sick. 
I don't believe God gives you obstacles to overcome because you done something wrong. In fact, I believe just the opposite - I believe he gave me this disorder because as we was creating me, he knew I was going to be strong. He knew who my mom was and how she would take care of me. He knew I would educate anyone and everyone I could. He knew what I could and would do with my life. 

I know this post is pretty short and simple but so was the was the question. 

Am I interested in a cure? No, ok. Not in a million years. Love yourself.
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." 
~ Jeremiah 29:11"

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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1 comment:

  1. Now there's a woman comfortable in her own skin in more ways than one... so much to be learned about the perspective of life from the Steph's of this world. Thank you :-) x


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