13 May 2014

Ichthyosis Awareness Month: Samantha's story. "three generations down you get to understand the condition in a way nobody else can."

Samantha's story of life with Ichthyosis is one about the condition being in three generations of her family. Her mother, her and her daughter. She has EHK.

Samantha shows that personal experience and knowledge of this rare condition is so valuable. When her daughter was born, she knew exactly what to do.

Samantha contacted me on Facebook during the Ichthyosis Awareness Blog Project, asking to be involved. I'm so glad she did - this is amazing writing.

"No surprise when I was born unlike when my mother arrived into this world! My mother has EHK (EI) and knew of the 50/50 chance I could have it. When I arrived I looked “normal” but as soon as they started toweling me off my skin began to tare and they knew I had EHK.

My family never treated me like I couldn’t do anything. I have fond memories of my grandmother combing my hair with tea tree oil and my mom telling me you can do anything! I never felt alone as a young child with “my skin” as my mother had it too, this “skin” was normal to me. As I got older this normal image started to fade…I wasn’t average. Even having a relatively mild case of EI my skin was fragile, I tore easy, constantly needed exfoliating, overheated, wasn’t soft, got infections easy. “It’s ok to say it sucks,” my grandmother would say and that made me feel better, I could release the feeling of being abnormal. When I was little my first thing I would say to new people was “I have really dry skin just so you know, so ya,” and it would break the ice. Most people wouldn’t even realize until they felt my hand. But why did those kids have no skin problems? Why did I have this skin?

Is it psoriasis? No. At least it’s not on your face. Well, thanks. It’s just on your hands? No. Your lotion smells. It looks like snake skin!

As I got older that child transparency of who I was started to fade. I wanted to hide my “flaw” and when somebody did ask I was ashamed. I’d hide my hands and cover up my legs. People started to make fun of me in middle school and ask those questions I hated. I hated my skin. My confidence plummeted and I became a shy, anxious person. But that wasn’t me.

Time heals. Looking back I survived school ok. I had my family. People always loved me and I even had friends help me with my skin! One dear friend broke the ice by saying “try this lotion on your hands,” and I looked at it and it might as well have said Victoria Secret’s Useless Hand Moisturizer but people cared and had their own issues they always disclosed to me. I became a beacon for people to confide in and that skin? Well who cares.

Then came Eve, my 2nd little girl that I knew as a 12 week fetus would have my skin disorder thanks to a CVS. A flood of emotions as the genetic counselor told me she had the skin disorder, why couldn’t she not have “it” like my first daughter? Will she suffer? Will she resent me? Will she be healthy? Will she be made fun of? I remembered the time I fell off my bike and how bad my skin tore, how I got infected. Will this happen to her? Probably, I’m not stopping her from going on a bike. I’ll tell her she can do anything just like my grandmother and mom said. That our skin heals wicked fast so you’ll be ok. It hurts but you’ll heal.

I prepared for the birth as best as I could, the whole reason why I got genetic testing. I make a checklist of all the DO NOT’S for the big day to give to the hospital, do not towel her off, do not use adhesives, do not rub, no harsh clothing, no heat lamps, lamb skin rug surface under body, mother will administer any skin care/bathing, you name it I micromanaged it. I made sure hospital, doctors, nurses knew before hand about Icthyosis. I explained to anyone thru contractions remember she has my skin! Remember! I wanted them to know our fragility, I wanted them to know that I will handle this. This has become my special trait.

Eve was born at 4:10 PM and handed to me. She looked like she had average skin minus some thickening on her hands. Our “version” of EHK starts presenting itself later with skin thickening on joints, when born we are very fragile. My mom bathed her in our hospital room. They had to regulate her temp without toweling her off and that took some difficulty…nothing they did worked. I was adamant she didn't go to NICU nobody knew her better then me, I didn't want the hospital traumatizing her skin accidentally like they did me and my mom exposing her to infection. Knowledge is power.

But do you know what did raise her temperature?

That entire night I held her to my skin. Breastfed her and diaper changed her on me. They would check her with her in my arms and her temperature was back to normal. We left the hospital when I was discharged together with only one tiny blister and no skin taring. As we left the nurse manager told me how great it was to see a mom like me and that made me happy, I tried hard, three generations down you get to understand the condition in a way nobody else can. It’s normal to me.

I still have my moments where having this un-average barrier makes me feel weird, is uncomfortable feeling, brings back insecurities, but I make sure to be honest and upfront. I’m that little girl again, this is me! It’s fun to experiment with my own lotions and buy my daughter and I croc shoes. My first born who is unaffected comes in during bath time and helps exfoliate me which is just, you know, the cutest thing in my world. My husband scrubs my back. When I look at my hand I think, hey, this looks like my mom’s hand. I love it.

My story is a happy one. My differences have made me who I am, a writer, a mother, an advocate for the underdog, an experimenter, open-minded. My husband told me once that you must escape the fear of social acceptance and rise above it and I aim to listen to his kick but advice. Rise above the stigma of normal and you'll see people change. A lot of people don’t know I have Icthyosis and are surprised when I tell them if they ask why my skin is dry, I haven’t experienced cruelty in a long time and that’s because people have come a long way, blogs like Carly’s spread a beautiful word of acceptance and inform on an otherwise unknown topic. Different is ok. It’s lovable. It’s smart. It’s me, my daughter, and my mother."

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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