27 May 2015

Ichthyosis Awareness Month - Annaliese and Jossilynn's story: "Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring."

Today Annaliese shares her story of being a mum to Jossilynn - a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter's skin. Such an amazing advocate.  Annaliese writes that "Ichthyosis is a hard sell" - and I  get this. When you read about the severity of the condition on medical websites, it's overwhelming, but when stories like these are shared, it can make it easier to understand for new parents. 

Meet Annaliese and Jossilyn. 

"I always knew I was going to be a mom. When my sister Tasha, had her first baby Morgan I didn’t think twice. I babysat often and spent as much time with him as I could. He is 13 now and I swell with pride at his accomplishments and put on my mama bear face when he’s hurt. I was only his age now (13) when he was born, but I knew then. Most girls dream about becoming lawyers, playing sports professionally, and college. I knew I was going to be a mom.

When I found out I was pregnant with my first, it was a surprise. It was also a whirlwind. Within a year, I was pregnant, engaged, married, a mother, and then a Navy wife. Not to mention moving 3000 miles away from everything I knew. Those early years were definitely learning ones. Full of trial and error for both my husband and I. I think that’s why we’ve handled things as well as we have recently.

The week my husband was discharging from the Navy, I found out I was pregnant with number 2! A surprise, but only because we had been trying for awhile after Tristan, our son, was born to have another with no luck. So, we packed up and moved back to our little small hometown in California to prepare for our daughter. My pregnancy was normal; the birth itself was complicated with a previous emergency c-section with our son. So when I went into labor, they prepped the OR immediately.

Jossilynn was born December 22, 2012 at 12:01pm. There was a bit of panic in the room, I just saw my beautiful daughter. After that she was transferred all the way up to UC San Francisco where she was diagnosed with Epidermolytic Ichthyosis (EI). She was also diagnosed with Palmoplantar Keratoderma (PPK), which means her palms and soles are affected as well. I have told my longer story before about the early experiences, what I want to talk about is now ☺
Fast forward 2 years. Jossilynn is a sassy, opinionated, spoiled, funny, cunning, and beautiful girl. She tests my limits every single day. Her skin doesn’t blister as much as it did that first year of her life but she does have more build up now. She has nightly bathes, usually with bleach, dettol, or apple cider vinegar. After her bath she is covered in aquaphor and pajamas.

Antibiotics. Oh antibiotics. We went through a very rough year with infections. Mostly strep A type. She would be on Clyndamyacin for 2 weeks, she would be fine for two weeks, then BAM; Infection! It got so bad that I was literally begging her dermatologist to try a constant low dose antibiotic for the time being. I had done the research and read all the side effects that come along with a long term antibiotic. But, when your child is in constant pain, you do what has to be done. We started her on a low dose of amoxicillin almost 3 months ago now, and not one infection. She has been so happy.

When you find out that you’re going to be a parent, you rarely take the time to think of what could go wrong. Something like Ichthyosis, wasn’t even on my radar. I had never saw or heard the word until I seen it written on my daughter’s chart 2 days after she was born. Jossilynn’s older brother was just diagnosed with Type 1 diabetes 2 months ago. I felt like I had been stabbed in the heart twice. Diabetes is a well known disease.. You see it everywhere. With Ichthyosis, I didn’t find any real information until 2 months after we brought Jossilynn home.

Ichthyosis has become our normal, and slowly so is Diabetes. I have two special children, not special needs. They take up a lot of my time, true. Some days I want to shove my head under a pillow and scream, and I won’t deny it may have happened a time or two. I still wouldn’t change my life for anyone else’s. Every day I watch my children get bigger and I can’t slow it down. I watch my son become more independent and give himself a finger prick, I watch Jossilynn become more compassionate and care for her doll. One day they’ll be grown and I refuse to miss one aquaphor application or insulin injection!
Ichthyosis is a hard sell. When you are first diagnosed, or your child is diagnosed you’re perplexed. What in the world is Ichthyosis? If you’re reading a website definition it goes something like this; Ichthyosis is a word to describe a host of genetic skin conditions, up to 28 different types. Ichthyosis is generally made up of fish-like scaling on the body. Patients tend to have a lot of skin build up, tend to overheat due to the skin buildup, along with other complications. There is no cure. The best treatments are made up of disinfecting, creams and lotions, and temperature control.

Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring. I would never say I am an expert on Ichthyosis, I learn more all the time. But, at a certain point it becomes like a second language. So many abbreviations, scientific words, and double meanings. Not to mention they keep changing the name of the conditions! What used to be EHK (Epidermolytic Hyperkeratosis), is now simply EI (Epidermolytic Ichthyosis).
I am my childrens’ biggest advocates. I learn more to better myself, and better their care. I can usually tell our dermatologist what needs to be done or reevaluated. Of course I always defer to her. I would never ignore the doctor’s orders, I can just tell them what I feel will be best in my experience since no one knows Jossilynn and her skin like I do.

I look at my life and I know I made the right decision even when I was 13. I was born to be a mom. I am a smart, independent, strong woman that is capable of many things but I see my life now as more rewarding than anything else I could go out and accomplish. One day when my kids are older and more independent, I will probably be bored out of my mind. I will eventually find another goal in life, but raising these beautiful special children will always be the most rewarding."

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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