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
I’ve been asked many times if a “cure” was invented would I want to take it? My answer? No.
“You knit me together in my mothers womb, I praise you because I am fearfully and wonderfully made.”
~ Psalms 139:13-14.
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.
“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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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
Stephanie Marie…you are truly my hero! If I could be half the woman you are it would truly be a blessing…you were and will continue to be truly an inspiration to so many. .I am honored to be able to have you as a dear friend and family member..I love you Steph and you will truly be missed…fly high baby girl