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Archive for July, 2013

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 


 


Are We Wired for Kindness?

 

As you may already know, FIRST engages in social media, in a plethora of different ways, all in an effort to educate, inspire and connect all those affected with icththyosis.  Some days we are greeted with posts and comments that offer new and unexpected skin care tips – other days it might be a mom looking for support, or an affected person who just wants to have their voice heard. And still at other times, social media brings us to the very doorstep of compassionate souls – ones we likely will never even meet – out there in the world, advocating for our members. 

As volunteering and fundraising are a big part of our efforts to support the community, a few weeks ago we decided to post an online poll to facebook asking followers to tell us, in a single word – what volunteering actually feels like.  Then, we kicked back (only for a minute!) and watched as comment after comment filed in.   So, today after weeks of analogy, contemplation, and discussion, we are happy to announce, that social media has now served us in a new and exciting way.  It helped support a theory; one that we can now confidently and indisputably share with you, right here, right now.

{Insert drum roll} Doing good…feels good!

Yes, that’s it. That’s our theory.  Wait…don’t leave!  We have since found out that our theory is simply a scratch on the surface of a much bigger, broader, biology-based, “do good” theory!  In fact, did you know that there is a biochemical reason for helper’s high?

We’ve even found someone who has dedicated his work and his life to researching this very theory and we are happy to  welcome  guest blogger, Dr. David R. Hamilton, PhD, a friend of FIRST, scientist, speaker and the author of ‘Why Kindness is Good for You’ and ‘The Contagious Power of Thinking’, and the creator of the popular blog “Using Science to Inspire.”

 The 5 Side Effects of Kindness

by David R. Hamilton PhD

When we think of side effects the first thing that springs to mind are the side effects of drugs. But who’d have thought that kindness could have side effects too?

Well, it does! And positive ones at that.

1)      Kindness Makes us Happier
When we do something kind for someone else, we feel good. On a spiritual level, many people feel that this is because it is the right thing to do and so we’re tapping into something deep and profound inside of us that says, ‘This is who I am.’  On a biochemical level, it is believed that the good feeling we get is due to elevated levels of the brain’s natural versions of morphine and heroin, which we know as endogenous opioids. They cause elevated levels of dopamine in the brain and so we get a natural high, often referred to as ‘Helper’s High’.

2)      Kindness Gives us Healthier Hearts
Acts of kindness are often accompanied by emotional warmth. Emotional warmth produces the hormone, oxytocin, in the brain and throughout the body. Of recent interest is its significant role in the cardiovascular system. Oxytocin causes the release of a chemical called nitric oxide in blood vessels, which dilates (expands) the blood vessels. This reduces blood pressure and therefore oxytocin is known as a ‘cardioprotective’ hormone because it protects the heart (by lowering blood pressure). The key is that acts kindness can produce oxytocin and therefore kindness can be said to be cardioprotective.

3) Kindness Slows Ageing
Ageing on a biochemical level is a combination of many things, but two culprits that speed the process are Free Radicals and Inflammation, both of which result from making unhealthy lifestyle choices.

But remarkable research now shows that oxytocin (that we produce through emotional warmth) reduces levels of free radicals and inflammation in the cardiovascular system and so slows ageing at source. Incidentally these two culprits also play a major role in heart disease so this is also another reason why kindness is good for the heart.

There have also been suggestions in the scientific journals of the strong link between compassion and the activity of the vagus nerve. The vagus nerve, as well as regulating heart rate, also controls inflammation levels in the body. One study that used the Tibetan Buddhist’s ‘Loving Kindness Compassion’ meditation found that kindness and compassion did, in fact, reduce inflammation in the body, mostly likely due to its effects on the vagus nerve.

 4) Kindness Makes for Better Relationships
This is one of the most obvious points. We all know that we like people who show us kindness. This is because kindness reduces the emotional distance between two people and so we feel more ‘bonded’. It’s something that is so strong in us that it’s actually a genetic thing. We are wired for kindness.

Our evolutionary ancestors had to learn to cooperate with one another. The stronger the emotional bonds within groups, the greater were the chances of survival and so ‘kindness genes’ were etched into the human genome. So today when we are kind to each other we feel a connection and new relationships are forged, or existing ones strengthened.

 5) Kindness is Contagious
When we’re kind we inspire others to be kind and studies show that it actually creates a ripple effect that spreads outwards to our friends’ friends’ friends – to 3-degrees of separation. Just as a pebble creates waves when it is dropped in a pond, so acts of kindness ripple outwards touching others’ lives and inspiring kindness everywhere the wave goes.  A recent scientific study reported than an anonymous 28-year-old person walked into a clinic and donated a kidney. It set off a ‘pay it forward’ type ripple effect where the spouses or other family members of recipients of a kidney donated one of theirs to someone else in need. The ‘domino effect’, as it was called in the New England Journal of Medicine report, spanned the length and breadth of the United States of America, where 10 people received a new kidney as a consequence of that anonymous donor.

******
This information and all scientific references can be found in more detail in my books, ‘Why Kindness is Good for You’ (Hay House, 2010) and ‘The Contagious Power of Thinking’ (Hay House, 2011).

 

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!

 


Your Donations at Work…

 

Latest FIRST funded Research on Regenerative Medicine & Stem Cell Biology

As one might imagine, the most top-of-mind question FIRST is asked by nearly all those affected with ichthyosis is:  What type of research is FIRST currently funding?  And, in fact, one of the most rewarding and exciting parts of our jobs, is…providing the answer.

­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­­Since 2006, Dr. Dennis Roop, an internationally recognized leader in skin disease research and his team at the Charles C. Gates Center for Regenerative Medicine and Stem Cell Biology at the University of Colorado, has been funded by FIRST research grants to continue their cutting-edge work in epidermolytic ichthyosis (formerly known as EHK).

 Traditionally, stem cell research has focused on cells that are isolated from embryos and have unlimited “pluripotentcy” (the potential to differentiate into any type of cell or tissue). However, the goal for Dr. Roop’s  project is to generate induced or “reprogrammed,” pluripotent stem (iPS) cells, from adult cells.

Dr. Roop is specifically working with adult cells of epidermolytic ichthyosis (EI) patients – essentially reprogramming, or “inducing” pluripotentcy, by introducing factors, into these cells, that are capable of removing all of the cell’s memory, stripping it of all genetic coding as an adult cell, and reverting that cell back to an embryonic-like state. The reprogramming procedure gives the adult cells nearly the same pluripotent capabilities as embryonic stem cells.  There are two advantages of working with iPS compared to adult cells: they can multiply for a more prolonged time than adult cells and gene correction strategies work more efficiently in iPS cells than in adult cells.

The long-term goal of Roop’s work is to create iPS cells from individual patients, correct the mutant gene they contain, differentiate the iPS cells into keratinocytes andthen graft the corrected keratinocytes back onto the patient–in hopes that  they will multiply and generate unaffected skin. The research is best described in the above video, taken September 2012, whereby the fascinating research of Dr. Roop and his team is explained to a family affected by EI, in the very clinic the research is being conducted.

What specific progress has been made?

To date, the defective K1 gene in one patient’s iPS cells has been corrected.   This was achieved by introducing a zinc finger nuclease and a piece of DNA that contains the normal version of the mutant K1 gene into the iPS cells.  The zinc finger nucleases are like molecular scissors that cut the K1 gene near the site of the mutation.   The cells own DNA repair machinery then replaces the cut, defective region of the K1 gene with the introduced normal region of the K1 gene.

Tests are currently being performed on the corrected iPS cells to make sure that they are genetically stable and contain no new mutations.  Once that has been confirmed, a special recipe of nutrients will be added to the corrected iPS cells to allow them to become keratinocyte stem cells, and those will then be grafted onto mice to see if they will form a normal epidermis.  Differentiating iPS cells into keratinocytes is routine in many labs and well-established in Roop’s lab.

More on Dr. Dennis Roop’s research regarding EI (epidermolytic ichthyosis).