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Posts tagged ‘lamellar ichthyosis’

“Our Caterpillar Would One Day Be a Butterfly”

We often hear stories from young families who are given the diagnosis of ichthyosis, soon after the birth of their child. Many families are surprised, confused, and often scared. This week we received a story from the Taylor family, sharing not only how they coped with the initial news that their baby Brooklyn, now three months old, was born with lamellar ichthyosis, but how they are finding their strength in Brooklyn herself.
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Brooklyn Taylor was born as a collodion baby in October of 2013 at Fauquier Hospital in IMG_20131107_195144Warrenton, Virginia. We had no knowledge of this beforehand and our oldest child had no signs of ichthyosis, so seeing Brooklyn like that was very scary for us. She was full-term and appeared very healthy, but when they took her from my arms I thought the worst and prepared myself to hear that she wasn’t going to make it. Hours after she was born they transferred her to a more equipped hospital.

She spent nine long days in the NICU ward at University of Virginia in Charlottesville. Doctors came and went and we were told the worst, but we knew that our little caterpillar one day would become a beautiful butterfly. Her skin appeared as if she had been burned and it was so tight that it pulled her mouth and eyes open until they were flipping outwards. We were afraid that she wouldn’t be able to eat on her own due to the complications of her closing her mouth, but Brooklyn didn’t give up. With help from a wonderful lactation specialist she latched on, but later we realized it was less stressful to just bottle feed.

A doctor suggested that we go ahead and do a skin graphic surgery on her eyes to help them close. We begged him to wait until the hard shell came off so we could see if maybe it would fix itself. Weeks after coming home, the membrane fell off and within days Brooklyn was closing her eyes on her own. We went to a follow-up appointment with the doctor and when he saw her he could not believe his eyes.

IMG_20131204_120251 Later that month we were told by her dermatologist that she had lamellar ichthyosis. We were overjoyed to finally have a name to put with the condition, but reading about lamellar was probably the hardest thing for us to do. Of course the pictures and information were very helpful, but they didn’t give us any hope. Later we saw that the hope we were looking for was right there in Brooklyn. From day one, she has showed us to never give up and that she doesn’t need to be healed, but accepted for who she is and how she is – beautiful inside and out.

Three months have passed and we are still learning about her condition and finding out what works for us. Bath time may be long and straining, but Brooklyn seems to enjoy it and she sure does remind us when its time for it. She is a very happy and demanding baby and every day is a challenge, but she loves having all the attention. Other than that, she is a normal child to us and should be treated as one by others. We are so proud of our beautiful little girl and because of her everyone can see what real beauty looks like.


The College Survival Guide

 

Going off to college, for anyone, is never an easy transition.  Add in a rare skin condition that requires extra time, attention, and often, an explanation, and it can produce a whole new level of stress.   Over the years members have shared advice, tips and real-life college experiences and today we’re sharing the best-of-the-best “college survival” how-to’s.  Remember, this guide is compiled of thoughts from those affected with ichthyosis whom  have been in this very same “college bound” situation. The goal is to help ensure that affected individuals have the most successful first-time-on-their-own adventure as possible!

1.       Discuss Needs With Housing People

Ichthyosis requires needs that may not apply to the average student.  Make sure you discuss these with the people in charge of the housing facilities.  Maybe some dorms do not have air conditioning – you’ll have to request that you be placed in one that does to avoid heatstroke on hot days.  Maybe only certain size refrigerators are allowed in the dorms – you’ll have to request that you have one that is slightly larger than regulated size to keep enough ice packs in the freezer should you need them to cool down. Provide them with a doctor’s note regarding your condition, well before moving into the dorm so that they can prepare ahead.

2.      Inform People

Most people do not know what ichthyosis is, be patient with them and explain it. Being up front with your issues in the beginning stops the gossip from day one. You will always have a bully or two but 95% of the people out there have empathy and will help you with your issues. You may even give them a brochure they can look through and understand that it is a genetic condition. Especially make sure you let your roommate know up front what some of the side effects might be: (e.g. skin shedding, can’t sweat, eyes don’t close all the way, etc.).

3.      Be Yourself

You really don’t have to be a people pleaser. In fact, trying to make everyone your best friend, can be a really big waste of energy.  Don’t try to impress anyone, just be yourself. Your friends will find you.

4.     Friends

And once they do…surround yourself with people who genuinely care about you.  College is so much different than high school…don’t feel that you need to be friends with the same people all year.  Many college students have a completely different set of friends from freshman to sophomore year.  Eventually you’ll find your group and more than likely they will be your closest friends throughout the rest of your life.

5.      Rudeness vs. Ignorance

Although it may feel hurtful, most people don’t mean to be rude when they ask about your skin…they are just ignorant and don’t know how to approach the topic.  Most times they are curious and instead of simply asking they try to come up with a sarcastic joke about it to break the ice.  Don’t be rude back, educate them. You’ll be surprised at how quickly perceptions can change.

6.      Clean Up After Yourself

Each form of ichthyosis will require a different type of upkeep.  For example, you might have to sweep the floor a lot due to your skin shedding.

7.      Roommates

Ichthyosis or no ichthyosis, almost everyone’s biggest fear about going away to college is meeting their roommate. How will I live with a total stranger?!  Please know that is a VERY common fear…even in those without skin disorders.  Don’t expect the worst and don’t expect to become best friends.  Just be yourself, educate them about your skin and learn to live together.  If you have the opportunity to meet them or speak with them before moving in with them, that would be the best time to let them know.  Who knows? You might end up with the best friend you’ve ever had in your life!

8Get Involved

Don’t be a hermit held up in your dorm room.  Get out and get involved in activities.  Make friends.  Take part in something you love doing.  Find time for your passions.  If it’s football, play with some friends.  If it’s acting, audition for the musical.  If it’s singing, join a choir.  If it’s volunteering, find a worthy cause and lend a hand.  Take electives that will bring you joy.  These types of things will keep your stress level down and help you get the most out of your time in college.

9. Time Management

Be sure to give yourself enough time to prepare for class and any special campus activities. Many people with ichthyosis require additional preparation time to care for their skin condition and to plan for the day ahead.  Rushing through your routine, or getting caught without your “supplies,” can add extra, unnecessary stress.

10.      Don’t Procrastinate or Get Lazy

Get involved but don’t make college all about a social life.  You are still there to learn, to grow, to be challenged.  It’s all about a healthy balance between the two.  Take a reasonable amount of classes.  Stay on top of your classwork.  Study hard.  Never give up, even if some classes are challenging.

11.      Get Sleep

This might seem like an odd piece of advice but you’ll learn quickly why this is on the list.  There will always be schoolwork to do.  There will always be friends to hang out with.  There will always be fun things to do or see.  However, sleep is critically important to your overall well being, and your attitude toward life.  Make sure you get a decent amount of sleep each night to have enough energy to face an often busy next day.  Also, learn the value of naps!

12.  Heat Stroke

Make sure your R.A. (Resident Assistant) and roommate know about heat stroke and its signs and symptoms if your ichthyosis prohibits you from sweating.  It’s just helpful for them to know should you start overheating or get a fever.

13.  Exercise and Eat Right

Sure you’ll probably be walking around a lot to classes and have plenty of options for food.  But you don’t need to eat pizza every day and after a while your body will get used to walking those routes every day.  Exercising and eating right are important things to keep off that “Freshman 15.” Keep your mind active and alert for class, and keep your health the best it can be.  A healthy and energized body may actually be your best tool for a happy, productive college experience.

14.  Home Sweet Home

Call home as much as you need.  Everyone goes through homesickness at some point.  It’s natural.  It’s all you’ve known your whole life so far.  Stay in touch.  Go home to visit on breaks.  Keep lots of pictures around to remind you of your support system.  They love you and are cheering you on.  It’s hard on them, too!

15.  Ichthyosis

For the most part, you’re going to be like an ordinary college student.  You’ll have the same fears and the same opportunities.  Don’t let your skin disorder hold you back.  There have been countless people (with ichthyosis) before you who have gone to college and graduated at the top of their class and gained some of the best friends they could have ever asked for.  You’ll have ups and you’ll have your downs, but you have a team of people behind you who are cheering you on…they are called HOME.

Read the “real-college-life” experience from FIRST member Greg LiCalzi:

Greg LiCalzi with college roommate

Greg LiCalzi with college roommate

When entering Union College for my freshman year in 2000, I was scared of the fact that I would be sharing a room with a complete stranger.  I avoided sharing rooms with strangers my entire life, forgoing sleep away camps and other fun things that would require me to shower and cream up in front of people.  I didn’t know how people would react. Would I forever be known as the guy with the weird skin who uses all these different type of lotions? I found out quickly that all my fears were nothing but fears.  I told my roommate, Scott,  that I had lamellar ichthyosis, a rare skin disorder, which forced me to “lube” up after every shower. He had a few questions but went right back to unpacking his stuff. I became comfortable living with Scott and opened up more about my disorder to friends on my floor. Ultimately, I lived in a fraternity house with 25 other guys who all knew what I had and always made me feel comfortable.  What we sometimes don’t realize is that everybody has issues. 

Being upfront with your issues in the beginning stops the gossip from day one. You will always have a bully or two but 95% of the people out there have empathy and will help you with your issues.  I even had floor mates come to me asking my advice on different types of lotions because I had such a vast collection. 

-Greg LiCalzi 


 


My Life as an Ichthyosis Mom

 

Over the years FIRST has collected and shared hundreds of “life stories,” as storytelling offers a meaningful way for members to open up and communicate their most significant, emotional, and inspirational moments.  And, equally as important, stories can heal our hearts and open our minds.  Today we’d like to share a mother’s story that began with a life-changing choice in 1986…

My Life as an “Ichthyosis Mom”  by Tracie Pretak

Things definitely did not start out easy. I was a freshman in college with huge plans and dreams for my future…but it was all crushed in a hurry when I made a life-changing choice and I was faced with an unplanned teen pregnancy. I became a single mom on June 15, 1986. I will never forget that day.

I remember going to the doctor on Friday for a check-up. It was still 3 weeks until my due date, and he said he expected me to go full-term. It was weird…but I had this strong sense that the baby was going to come early. On Saturday, our family attended my cousin’s wedding and then a graduation party. My brother Mark kept trying to get me to dance. I finally gave in when the Blues Brothers were playing, but at the end of the song, he dipped me and lost his balance. We fell to the ground and his knee hit my lower back. I was up all night with muscles spasms…and when the labor started, every labor pain was accompanied by more muscle spasms.

On Sunday morn, we headed to the hospital. I had this really strong belief that something was going to be wrong with the baby. I couldn’t explain it…I just knew. I also decided not to breast feed. I didn’t know why…just that I shouldn’t. And I knew that even though something was going to go wrong, somehow, the baby would be okay. I truly believe that this was God preparing me for what was to come.

Bailey Pretak

Bailey Pretak

The delivery went quickly, but I knew the moment I looked at my mom’s face that something was wrong…VERY wrong. Little Bailey Rae was born encased in a collodion membrane. The best way to describe it is to say she looked like a little “sausage”. There was fluid between the membrane and her skin. I didn’t even get to hold her! They brought her over in an incubator so I could reach in and touch her. Then, within 20 minutes of her birth, she was life-flighted to the nearest NICU. My doctor looked in his medical books and came in to tell me he believed she had ichthyosis. A dermatologist at the NICU called me the next day and confirmed it was lamellar ichthyosis.

I wasn’t released from the hospital until Tuesday, so she was 2 days old when I finally got to hold her! She stayed in the NICU for two weeks, until most of the membrane had peeled off.An unplanned teen pregnancy radically changes your life. Being a single parent is incredibly difficult, and having a baby born with ichthyosis is truly overwhelming. As fate would have it, I had all three! I honestly don’t know how I would have done it without the love and support of my family. My parents offered to watch her so I could finish college. Kip and Katrina helped, too.I wish I could say it was also easy, but there were parents who called the school principal and asked to have their kids moved to a different class; people who wouldn’t touch things she had touched; kids who teased her and called her “Scaly Bailey”. Those things just broke my heart.

Bailey Pretak

Bailey Pretak

As the years went on, I became more and more angry at people’s reactions and Bailey became more shy. She would hide behind me because she knew she was different. It wasn’t until I watched Bailey’s reaction the first time she saw a black person that I realized it was just a natural reaction for people to stare at something they’ve never seen before (however, this still doesn’t explain their rudeness). So we decided that every time someone stared, we would smile and wave. It has helped so much. You see…my negative reaction to the stares and rudeness was only making her more insecure. It was a turning point for both of us.

However, God has blessed her with so many amazing people to help her along the way. She was loved and accepted by her pre-school teacher, Mrs. Shauna (Shauna Miller). She met a wonderful friend in that pre-school, Julie Boults, who is still her friend today. She had the best Elementary School Principal in Mr. Bob Grumley and she was loved, accepted and challenged by her dance teacher, April Cush. Her confidence grew as she gained more and more experience performing on stage, thanks to both April and Beth Lenaway. She got a “daddy” who loved her like his own and adopted her and had a “sister by heart” in Cailtyn Pretak, who practically lived here at times. She had a pen pal, Laura Ashton, who was the first person she ever met with ichthyosis and who truly understood what she was going through. She was blessed with the best friend ever when she met her college roommate Natalie Cisternas Hann. And our church has been amazing! She credits them with being the first group of people to make her feel accepted. Her Sunday School teacher, Toot Mecca, changed her life for eternity.And there are two moments of her journey I will never forget. One, when she was crowned homecoming queen, (voted on by her classmates!), a moment we never dreamed was possible for a girl with ichthyosis. The other was during her senior year of college, when she sat in the spotlight and played piano on stage in front of an audience full of people. I couldn’t stop crying as I realized how far she had come!Bailey has grown from a shy, insecure little girl into a strong, beautiful woman who now teaches little “princesses” the meaning of true beauty.

Yes…it has been extremely difficult at times, but I can honestly say that what began as my greatest challenge in life has turned out to be my biggest blessing ever. God has given me the sweetest, most compassionate and most inspirational person I have ever known as my very own daughter. Wow! Today I am feeling SO blessed to be an “Ichthyosis Mom.” :)

Please share your story with us!