Ichthyosis Awareness Month: Tiffany, Matthew and Tynnan's story. "This is OUR normal! Welcome to normal."

Tiffany and I got in contact via an Facebook support group for Ichthyosis. She saw my teaser for Ichthyosis Awareness Month and asked how she could be involved. She sent me her story pretty much straight away.

She's got two small children with Ichthyosis Vulgaris (IV). Tiffany believes she has Ichthyosis too - though she says she has not been diagnosed. I really like how she spells out the reality of parenting children with Ichthyosis: the judgement from strangers - and the the constant education she provides to these strangers and the community she lives in, and the way cream gets everywhere. This is the reality - from birth throughout life. She sys she's not a strong writer but I love the way she's told this story.

Meet Tiffany, Matthew and Tynnan.

"I'm the Mother of 2 beautiful children - Matthew and Tynnan.

Matthew is a smart, handsome, loveable, little boy. He was born in Jan 2011 with a white layer, what I was told as a nurse myself was a result of being overdue, yet he was born at 39 weeks- not overdue at all. I peeled that skin at every clothing and diaper change, just trying to get it off. (The layer of skin means Matthew was a collodian baby.)

The First 2 Years

We stayed inside the rest of the winter and his skin was dry just like mine. I would lotion him up at each diaper change and nothing helped. We went outside in the spring and he was always getting a 'sunburn' but within an hour of coming in it was gone. (I have now realized that he was getting overheated.) The paediatrician wasn't concerned so I shouldn't be either, Right? WRONG!

By 8 months his front teeth were in, as were a whole mouthful of others. The last of his canines came through 2 teeth fused together. We were sent to the pediatric dentist within a month he was seen, 'nothing to worry about' were her words. Just brush that one extra good and pray it comes in as 2 when he gets his permanent teeth. The pediatrician wasn't satisfied with that answer and wanted a dermatologist's opinion. By the time we were able to get into him baby Tyann was here and Matthew was around 18 months old.

The Dermatologist looked him over, I pointed out a few light spots on his skin with a black light and said 'He has Ichythyosis Vulgaris.' He looked at his scalp and said he shouldn't have cradle cap at his age. Well, he did and it wasn't getting any better with any home remedies we'd tried. So we left with prescriptions for shampoo, steroid creams, and little to no information.

He is 3 now and possibly on the Autism Spectrum. Yet perfect in every way to me!

We fight to keep him inside during the summer and hear horrible things when he goes out in the winter without a heavy coat or snowsuit. 'Oh he's so cold, look at those red cheeks!'

He can finally play outside without overheating to quickly, when others think it's just too cold.

Miss Tyann is a beautiful, smart, lively 20 month old. She was born in June 2012 at exactly 38 weeks, almost exactly 17 months after Matthew, with the same white layer of skin that he had at birth. I knew instantly that whatever he had, she had too.

My suspicions were dismissed after a month long rash and a visit to a dermatologist. Then another visit, she's allergic to egg whites, tomatoes, and disposable diapers. A follow up with Matthew's dermatologist and he knew instantly that she had a milder form of IV than Matthew has but it is IV. She too gets easily overheated and almost always has those cute red cheeks. She doesn't have the fused teeth or Autism but her skin is the same struggle as Matthew's, and mine for that matter.

Matthew's legs and back crack and bleed, and all I can do for him is to switch which lotion we're using or what we are putting in his bath (mineral oil or baking soda). Always a thick creamy lotion that feels more like glue than lotion.

We fight multiple times a day to get them out of the bath and lotioned up good before they air dry. The love playing in the water but can't stay in long.

A day in the life of a parent of 2 kids with IV

I'm called a bad parent because they go outside in a sweatshirt and sweatpants with a hat and gloves in the winter. When it gets sub zero they have to stay in and if we have to go out they are only out for a minute and I put coats on them. That's a rare occasion though.

I make appointments for first thing in the morning, knowing it's cooler, there seems to be more moisture in the air, and less people at the doctor to judge not having coats on them.

Every piece of clothing can potentially cause them to overheat and the heater in a vehicle can too. I have been known to turn the air on, stop and open the doors to cool them off.

Blankets are a struggle just like clothes.

You tell what seems like 80 people a day that their cheeks aren't red because of cold, its their skin disease!

You spell IV out to those same people or those eavesdropping on the 'bad parent.'

The lotions are like glue or grease and they are all over my 4 year old couch, the carpet, chair, and every sheet, blanket, and pillowcase in the house. Nothing really escapes it. You just learn it is your normal.

This year Matthew started an early preschool program to help his speech. I have explained until I couldn't explain any more to the them that he cannot be outside long or he will overheat and about he coat. They don't care and insist he will need one for recess.

Thankfully he has school at home for now so I can educate his teacher on what he can and can't do. They want all their information from government websites. Those are hard to find any IV information on. So I search frequently and just hope.

I worry they will be bullied and feel different in school, among other things. I worry about how Matthew will get lotion applied mid-day like at home. It is essential to his health but he's to young to understand or to put it on and nobody else will.

We live in a town of 82 people (no joke) and share a school with the next town over that has 126 residents. Just over 200 people to educate before he starts the 4 year old school program this fall.

This is OUR normal! Welcome to normal!"

 

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.