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The Magic of Mermaids by Shelly Menzia


Ahhhh. Dreams…the mystical journey of slumber through a world that lives deep within.  Have you ever wondered if dreams, perhaps, not only guide us under the moonlight, but can be equally effective in guiding us in the light of day?  FIRST member Shelly Menzia believes just that. In fact, one of her most vivid  and influential dreams occurred nearly 40 years ago, when she was just eleven years old; a dream that would whisper the very secret she had looked for most of her life. We are delighted to  bring you Shelly’s story of acceptance, transformation…and yes…mermaids.


Do you have dreams that are so real they haunt you for the rest of your life?

There is one in particular that I remember when I was about eleven years old. I was out camping with my family near the Copper River in Alaska in an old beat up camper, on an even older powder blue pickup truck. In my dream a “merman” came to the camper to take me from my family. He was not like the beautiful mermaids or mermen from the movies or books.  Although human-like in form, he had webbed feet and hands and huge “Spock-like” ears.  He was tall with various shades of dark, seaweed green skin.  Prince Charming…he was not.  He told me I had to go with him and marry him under the sea. I was terribly upset that my family did not try to stop him. It was like they had been expecting it. My family shrugged their shoulders, looked at me sadly and waved good-bye as he pulled me away. I waved back crying and begging for him to let me stay with them. He quietly but firmly pulled me along. 

 photo 3When we entered the water, I was amazed that the water felt so warm and comfortable and that I could breathe.  I had this amazing sense of freedom as we swam gracefully through the dark sea.  In the distance from up above I could see the sun shining and sparkling down towards me and I was no longer afraid of the merman.  After that I woke up but the dream has stayed with me for forty years. 

 It wasn’t until many years later I was able to analyze that dream with a friend and understood that it actually had some meaning to it. You see I was born with a rare congenital birth defect called ichthyosis (fish skin). It made growing up in our “soft skin is beautiful” society more difficult yet at the same time it shaped me into who I am.  My skin is very dry with little elasticity, it has a “scaly” like appearance. The only place and time I am truly comfortable is when I am in the water.  I spend hours in the tub and shower and put lotions on constantly so that I can feel as comfortable out of the water as I do in the water.

 I have faced some discrimination with ichthyosis, not being allowed into a public pool; when I was a kid, having people being afraid to touch me for fear it was contagious, and having my blood be refused when I tried to donate it at a blood drive at college.  These were just a few of the things that happened along the way.  I think the worst and most devastating incident however, was having my supervising teacher during my student teaching assignment ask that I not work with her anymore. She felt my skin was too “distracting” for the students to learn. I was devastated and I came very close to giving up my career in special education. I wanted to lock myself away in a room away from other people because of her prejudice and inability to understand.  Afterwards, I went home and had a good cry, (and consequently had the rest of my family crying) and went to take a long bath. (So long in fact my mother came to check on me…I think she had thought I had drowned myself or something.) I got through it though, and was placed with another woman who was a wonderful teacher and she was also very understanding.  She knew what it was like to have a skin problem because she had skin cancer.  She, along with my friends and family helped me get back on my feet emotionally and helped build up my confidence again. I ended up being much stronger for it and much less likely to place my beliefs about myself on the basis of one other person’s opinion.  Especially someone I hardly knew.

 photo (12)Even though I was stronger however, my skin was still an issue with me.  Oh, sure I could “handle” it OK and in 27 years of teaching I have never had a problem related to it.  Still, my perception of myself was fairly low as far as physical attractiveness goes.  I didn’t see myself as the person first, who happened to have ichthyosis. I was the girl with fish skin and somewhere inside of her – was me.

 Then something strange happened.  As I was talking about my skin condition to a new friend, I was joking, “Yeah, I’m part fish and part human…… Hey, I guess that makes me a mermaid!”

 In uttering that one goofy sentence, I went straight from monster girl with fish skin to a beautiful mermaid swimming and frolicking under the sea.  My perception of myself was changed radically and instantaneously from that moment on.  You have heard of “black pride,” “deaf pride,” and “gay pride,” with me it has become “mermaid pride.”  The many long baths I had to take, once tedious and boring, became trips to the sea in my imagination or I was like Daryl Hannah in the movie Splash.  Just going in to wet my “fins.” It was a magical transformation.

The Legend of Mermaids

After that I started doing some research and became fascinated with the legends of mermaids.  I learned that mermaid myths exist in almost every culture and they were thought by some to be healers or to have psychic powers.  There have been very credible people who have sworn that they have seen mermaids, sometimes right before a storm as if they were being warned of impending danger.  Many paintings show mermaids singing on top of rocks in the surf or playing with fellow sea creatures.  Most of them are beautiful romantic images.

Then I started developing my own theory about where the legends of mermaids may have come from.  What if just maybe, the legends of mermaids really did start with people who had ichthyosis?  I had to have inherited it from ancestors up to ten generations back and it had to come from both sides of the family, (recessive genes); Irish from my dad’s side and English/Dutch from my mother’s, both cultures which have mermaid myths.  Years ago people probably didn’t have lotions and baths to make them more comfortable so I imagine that everyone who had the chance would spend a lot of time in the water such as lakes, rivers, or oceans trying to stay comfortable.  Perhaps folks saw ichthyosis people in the water and along with seeing their fish like skin, the legends of mermaids were “spawned.” (Ichthyosis although rare is found in most cultures just like the legends of mermaids.)

 As I thought about it, I remembered going to an ichthyosis conference where for the first time I met other people with ichthyosis.  I was amazed as I got to know people, of the common similarities we had besides our skin. We talked about some psychic experiences most of us have had and I found out that almost every single person was musically inclined.  Many were involved in choirs.

So, of course, now I picture all OUR ancestors being the ones singing on those rocks and warning past sailors of danger.  Since then I have acquired quite the mermaid collection.  Of course, people who don’t know me have a hard time figuring out why I have all these mermaids- many which are bare chested all over the house.  (I have thought about making them little bras so the more sensitive people won’t be offended.)  My friends have been wonderful and always keep their eyes open for special mermaid “treasures” when they are traveling.  My most recent addition came from Italy.

I have had some fun with my mermaid revelation. Once in the Galapagos Islands I was on a Zodiac boat with some of the male guides from the ship.  They asked me about my skin but I didn’t think they would understand my English and I knew I wouldn’t be able to explain it in Spanish so I simply smiled at them and said very matter-of-factly, “Yo soy la sirena” (I’m a mermaid) and then I promptly dove into the water.  When I looked back at them they had their mouths hanging open as they looked back and forth between me and each other.  They couldn’t decide if I was crazy, joking, or maybe somehow telling the truth.  They looked at me strangely throughout the rest of the trip.  It was all I could do to keep from cracking up laughing every time they gave me one of those “looks.”  By the end of the trip I had been invited by the guides to sing and play with their onboard music group they had formed.  We had a blast.  It was a fun and magical trip.

It was several years ago now that I sat discussing the strange dreams I’ve had with my friend Lydia. When I told her about my merman dream she pointed out quite easily what it probably meant.  The merman WAS the ichthyosis and I WAS married to it.  I didn’t like it, my family didn’t like it, but there was nothing any of us could do about it.  It suddenly seemed so simple.

Now that I have been swimming through the “sea of life” for some time, I realize it’s OK to have ichthyosis and to be who I am. It’s not any scarier or worse than I choose to make it.  Whenever I want to, I can swim up to that sun shining and sparkling down towards me from the surface to be who ever I want to be or do what ever I want to do, because that is where the magic lives. The only thing that can ever stop me from going anywhere or doing anything is my perception of myself and all I can say about that right now is……Mermaid Power!!! 

What’s your story?  We’d love to hear it.


More from Mahwah…You Won’t Want to Miss.

What do you get when you mix a former biology teacher with a communications director at a Patient Support Forum?

As we disassembled the conference room following a day full of science, solutions and soulful conversation, I noticed what appeared to be a crinkle-edged, doodle-covered note on the edge of a table. Just as I was about to swipe it into the trash, a hand swooped in, snatching it up for the rescue.

“It’s an easy way to explain basic genetic mutation, using language,” Jennifer See said, holding it up for me to see.

Hmm. A quick and simple visual aid to the often complex biology of our very existence?  I was intrigued.

“To be or not to be,” she said, grabbing a fresh piece of paper and taking the seat next to me. As she began to re-draw what appeared to be the very same doodle,  it occurred to me that I was not the only person that could benefit from this avante-garde science lesson on the basics of genetic mutation. Luckily there were seven remaining minutes of power on my iPad…and Jennifer only needed one take!

Interested in learning more? Go to: What’s a Gene by, detailing the very same topic discussed in this video.

Tips from the Product Breakout Session in Mahwah, NJ:

Also, as promised, below is list of helpful tips and products discussed during our product break out session with doctors and members. Keep in mind, that FIRST does not endorse or favor one product over another. We keep a comprehensive list of creams, lotions, bath additives, cooling products, etc., which is available to you by contacting our office.  Below are just a few helpful tips and products mentioned in Mahwah:

  • Remember, creams and lotions are a personal preference. Ask your child directly, what lotions do they like?  This will help guide what is working for their particular condition.
  • The group collectively agreed that some moisture creams sting less than others. Over the counter petroleum jelly is still a popular alternative following a bath, and some members have not had the need to even try other products. It doesn’t sting and it is inexpensive.
  • Body conditioner was recommended by one of the teen attendees to smooth and soften skin.
  • For exfoliating the scalp, one dermatologist highly recommended the “Tangle Teaser,” a comb from the UK.
  • Shea butter, mixed with lotion, is popular and inexpensive choice for moisturization.
  • Dawn dish detergent is a great additive to the laundry;  with the regular detergent, add a squeeze in the washer.

Next Patient Support Forum stop? San Jose!

Live From Mahwah (Patient Support Forum)


Morning Session in Mahwah, NJ

There’s a full room of nearly 30 people at the forum today in Mahwah, including doctors, FIRST staff and affected members ranging in age from 2 to 67. Dr. Leslie Castelo-Soccio kicked off the day with a comprehensive overview of the variety of known mutations of ichthyosis. Her presentation included photos, specific symptoms and features of each mutation.  Additionally she presented promising new treatments that are currently being tested including oral retinoids and pathogenesis based therapy (more details with regards to treatments to be included in follow up article this week).

Dr. Keith Choate presented an intriguing, ”basic genetics 101″, whereby he discussed how our understanding of genetics has developed rapidly in just the past few years. He explained how the change or “mutation” in the genetic code, changes the RNA and ultimately causes a variety of changes in the protein. His presentation included the most common kinds of mutations; Non-sense & Mis-sense mutations, Autosomal Dominant Inheritance and Recessive Inheritance, as well as the possibility of spontaneous mutations and the utility of genetics in medicine. (FIRST will be posting a series of “genetics 101″ articles in upcoming weeks to provide a comprehensive explanation of the origin of genetic mutations).

Why genetic testing is important?  It helps the doctors to prepare for the type of care the child will need right from the beginning.  The types of genetic testing available includes prenatal, carrier testing, preimplantation testing (IVF). There is a new, less invasive way of genetic testing, that involves prenatal blood testing.  If you are currently seeking genetic testing, your dermatologist should be able to refer you to a geneticist. More on DNA Testing:

On a final note- Tphoto (3)he NIH research funding has been cut by 15% to due sequestration, which may lead to medical researchers leaving the field.  If you would like to get involved in helping to prevent more medical research budget cuts, affected families can call their representative and explain their condition.

Stay tuned for afternoon wrap up…

Afternoon Session:

The members broke out into groups based on age.  Discussions were lively and members were very excited to be able to connect one-on-one. One teenage girl even mentioned, “this is the very first time I met someone with ichthyosis, let alone a teenager!”  Tracie Pretak shared some of Bailey’s experiences with the teens, mentioning that dance not only helped build her self-esteem, but ignited a lifelong passion and in fact, Bailey would like to be a professional performer.

One young artist at the meeting also mentioned using photography “as a way of projecting my voice.”

The adults spent an entire hour sharing product tips including some new names like First Aid Beauty Ultra Repair Cream (you can order online); Lush Ro’argen skin conditioner. (complete list from the discussion will be available this week)

Also one member mentioned that after applying cream in the morning they apply 3 more times on the most affected areas, in 20 minutes increments over the next hour before leaving for work and it seems to be effective all day long.

We officially wrapped up at 4:15!  Stay tuned for more info from the Mahwah forum this week…



How Do I Inform My Child’s Teachers and Classmates About Ichthyosis?

It is difficult for a child to concentrate on learning when the skin is taut, cracked, sore, or itching. Some symptoms of ichthyosis can make simple activities such as holding a pencil, running and playing, or sometimes even sitting still difficult, if not painful.   That’s why it’s so important to make certain your child is entering a school environment that it is aware and informed, ensuring that school officials and classmates are prepared for any special circumstances they may encounter. The steps below will help to guide a, sometimes, challenging conversation for  parents, teachers and students. 

Parent-Teacher Meeting

Parents and teachers might find it helpful to convene a conference prior to beginning a new school or school year.  The conference could include parents, school nurse, principal and other appropriate staff such as counselor or physical education instructor. If possible, the child’s physician should also be involved. This will provide a forum for ensuring a well-integrated approach to support the child’s special needs in school.  Principals can help by making sure the larger school community is aware of the child’s condition and special needs, so that crossing guards, substitute teachers, and lunchroom workers do not inadvertently contribute to a child’s emotional and physical discomfort.

Informing Classmates

The second goal is easing the child’s transition into the society of his or her classmates. Since ichthyosis is usually quite visible, and may even be considered “disfiguring,” the child’s classmates need to have their natural curiosity satisfied. This can be handled in any number of ways. For instance, parents are sometimes available the first day of class to answer questions from students and faculty.  Also, although the student with ichthyosis probably has a ready response to queries about his or her skin, a teacher could  be instrumental in supplying words or phrases to better explain their different appearance. 

Other common strategies include statements written by parents to teachers that introduce their child as a singer, skater, pianist, etc., who happens to have ichthyosis. Letters may even be distributed around the school, and perhaps even to parents of the child’s classmates, particularly in the younger grades. 

It is critical to consider the age of the children and not to draw undue attention upon the child who looks different.   A common question that parents often struggle with is “Do we allow our child to be present during the ichthyosis discussion with the classroom?”  There are many benefits for both the child and classmates when they are present during the discussion.  The child is able to actively engage in the discussion and hear what is being said regarding their skin disease.  It also serves as an opportunity for self-expression that is in a safe and controlled environment.

 It is important that classmates understand ichthyosis as best they can. Generally, a straightforward, direct approach is best. The ridicule, isolation and depression so common for children with ichthyosis is only heightened by the ignorance that grows out of evading the issue altogether.

More Resources for Teachers & School Personnel

Last but not least, provide them with the Guide to Ichthyosis for Teachers and School Personnel booklet. The information serves as a quick and handy resource for teachers, and can offer  “peace of mind” for parents as they send their little ones off to school.


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).


Few and Far Between

“In the end what I learned is that the story was really not about our differences, it was about our shared connection.” – Meredith Rizzo

Every once in a while, “perfect timing” is more than just an eruption of coincidental moments…it is, in fact, destiny.  At least, that was the case when young photo journalist, Meredith Rizzo, set forth to create her final thesis for a Masters of Arts degree in New Media Photo Journalism from the Corcoran College of Art & Design.

“The assignment for our thesis was to submit a long form body of work,” said Rizzo when describing the very first steps of her journey. “Around that same time, I learned that there would be a FIRST family conference in Denver.  So, I decided to go to the conference and see if I could document someone, affected with ichthyosis.”

Meredith’s father, Dr. William Rizzo, a current member of  FIRST’s Medical & Scientific Advisory Board, is a geneticist specializing in inherited metabolic diseases at the University of Nebraska Medical Center.  He has been researching Sjögren-Larsson Syndrome for the past 25 years.  In fact, Dr. Rizzo is leading a Sjögren-Larsson Syndrome study to gather clinical information about its natural history and search for biomarkers (tests) that can be used to monitor future therapy.

As ichthyosis is one of the symptoms of Sjögren-Larsson Syndrome, the skin disorder itself was not unfamiliar to Rizzo, and in fact, she worked at the research lab with her father for an entire summer as an intern. But, now– as a curious and conscientious journalist– she was interested in hearing about the disorder, directly from the source. She hoped that one of the affected conference attendees would be open to sharing their routine, their challenges, and the bull’s eye of all inquiries: how the diagnosis of ichthyosis has changed their lives.

Chapell-Mia-web3“I met the Chappell’s on the very first day of the conference.  Their daughter Mia not only has ichthyosis, but she has Sjögren-Larsson Syndrome – the very same syndrome my dad has researched for all these years. So it was really great to meet someone whom my dad’s research really has really affected. The disease is so rare, that doesn’t really ever happen.”

As described in Rizzo’s essay:

Sjögren-Larsson Syndrome is a syndrome so rare its incidence is unknown, but doctors estimate around 100 people in the United States live with it. For Mia, neurological impairment associated with the syndrome means that she is still learning to walk, climb stairs, and hold herself upright. Her mental progress is two years behind that of other children her age, and she has ichthyosis: dry, scaly skin– a lifelong condition that will require a daily regimen of scrubbing and lotions.

Rizzo would soon discover that the syndrome itself, may have changed the daily routine and future plans for the Chappell’s and yes, they are learning to deal with the constant  boomerang of ups and downs, but in truth…

the disorder has really nothing to do with… their life.

Fate Takes its Next Cue…

“The Chappell’s were so open to the idea right from the beginning.”

And then fate stepped in again.  The young woman whose father, a gifted geneticist, researching one the rarest syndromes known to man, was being led to use her own gifts and raise awareness for that very same syndrome. “Coincidentally, they live only 45 minutes from me so I was able to really connect with them pretty often over the course of the next ten months.”

Rizzo spent time with Mia in nearly every aspect of her life; at her school, capturing the interaction with classmates; at one of her physical therapy appointments and on a few occasions she even quietly accompanied Mia during her morning and evening skin care regimen, with mom and dad. “Whatever she was doing or wherever they were going when I went to their home, they invited me to come along and document what was happening. I even tagged along on Halloween!”

One particularly painful milestone was the day Mia visited the Orthotic Prosthetic Center, in Fairfax, Virginia, for the very first time. “The photos from the day she went to the doctors and got fitted for her new leg braces really capture some of the medical challenges they are dealing with.”

The story behind the story was beginning to appear.  “It was remarkable how much of their lives they shared with me. But then I realized, I was giving them a chance to talk about their situation, because, so often, they are simply not asked.”

The Universal Lesson…of Love

Ten months later, she had gathered the pages of a story that had become not only a school project, but a mission.

During the final stages, Rizzo reached out to a connection she had made at Corcoran. “A mentor of mine is actually the photo editor for National Geographic Magazine. She introduced me to their graphic designer, who helped to format the whole photo essay.”

Meredith’s desire to tell an untold story and  infuse it with “the energy of the subjects themselves,” was quickly manifesting into a uniquely personal piece of work, combining text, video and photos, and crafting an online photo essay, and e-book, that reflects not only the deep and profoundly human experience of the Chappell family, but of the journalist herself.

“I went into the experience thinking I would write about how the family deals with symptoms, liking itching or immobility. I would reveal how their lives were so different than everybody else. But in the end what I learned is the story was really not about our differences, it was about our shared connection. The story of their lives isn’t about Sjögren-Larsson Syndrome, it’s about a family’s love for their daughter…and that’s universal.”

To view Meredith Rizzo’s entire photo essay visit, or download the e-book:
[photos by Meredith Rizzo]

Where Have All the Cowboys Gone?


FIRST Dallas Patient Support Forum ~~ June 8, 2013PSF-Dallas-2013-9

As Moe Wenik and I rode the trolley through the streets of Dallas, from downtown to West Village to Uptown and back, it was hard not to notice the presence of a fresh new city face. Construction sites lined nearly every sparkling-clean city street, and there was certainly no lack of upscale restaurants, trendy southwest terracotta capped condos – or hip, young-ish Texan professionals.

Dallas is, in fact, is a very pretty lady.

And although it was our very first visit to Dallas, neither of us felt very new-in-town – as the entire city had a sort of wide-eyed, first-timer feel.  However, something caught our attention just a bit more than the freshly fashionable ambience – yet…oddly enough…it was not a presence, but an absence.

“Where are the cowboys? The belt buckles? The fanciful, spurred leather boots?”, I asked repeatedly throughout the evening.  Well it appears that my vision of Dallas has taken up residence on the pages of historic American cliché, alongside its iconic cliffhanger, “Who shot JR?”  I returned to the hotel, having gobbled down the best turkey burger in town (Village Burger), knowing the history of the 100 year old Dallas trolley car, and with a slight twinge of disappointment about the cowboys, or lack thereof.

The next morning, however, I would attend my very first FIRST Patient Support Forum – and soon any twinge of disappointment about our trip to Dallas, would be wiped from my mind.  It was not only a day free from the inkling of “absence,” but a day full of everything I have come to admire and appreciate about FIRST: education, inspiration, and connection.  There would be no lack of patient support, peer-to-peer story sharing, medical advice and updates from the top practitioners in the field of dermatology, and …drum roll…hi-tech communications.

Anticipation filled the room as our esteemed panel of speakers including PSF-Dallas-2013-10Dr. Moise Levy, Dr. Meena Julapalli, Dr. Fred Ghali, and Dr. Keith Choate (via webex), took center-stage and offered a riveting summary of the latest genetic research and skin care therapies, plus upcoming projects and events for the entire ichthyosis community.

If you were unable to attend, below is a brief summary of some of the highlights extracted from the days discussion.

Old School Therapy is Still the Best Option:PSF-Dallas-2013-3

  Overall, the consensus amongst doctors and attendees was that skin care is very individual – you need to do some trial and error to see what works for you and your particular skin condition. However, many of the general tips did not require a hefty investment, or any particularly complicated regimen.

 Tips included:

  • Keeping a journal of “solutions” will help to establish a beneficial and permanent routine.
  • Bleach – Some participants agreed that a simple bleach bath is effective for some types of ichthyosis, as a skin softener and for bacteria and odor control.  Although the precise measurement of the mixture varies from person to person, it is recommended to use approx. 1 to 2 teaspoons per gallon of water.PSF-Dallas-2013-4
  • P & S Liquid by Baker Cummins Dermatologics – This simple and inexpensive ointment is highly recommended for loosening and removing scalp scale.
  • Virgin coconut oil is natural moisturizer and disinfectant and highly recommended by some of the attendees (cost effective too!).
  • Pedi Wands can be found in most beauty supply stores and can be great for getting to those hard to reach areas! (Pedi-wand is a pedicure wand).
  • Switching from lotion in summer to ointment in winter can be an effective way to keep skin moist, smooth.
  • Frogtog – In addition to cooling vests, this product is recommended as an easy-to-use neck wrap and great for beating the heat. (available at Walmart)
  • True Blue Morracon Oil from Bath & Body Works – Recommended by a few female members as both a sunscreen and a lotion, with a light feminine fragrance.
  • SPF 15 offers 94% of UVA protection; SPF 30 offer 97% protection, however, sunscreen brand is really an individual choice.  Fragrance, consistency, price point etc., are truthfully the deciding factors.  (FYI – there is also a significant price difference in “children’s sunscreen”, but it is, in fact, the same ingredients.)
  • Salt vs. Chlorine – If you are prone to infection, chlorine pools may be helpful However, for dryness, salt water pools have been reported to help as well.  Once again, trial and error will be your best way to assess the best treatment for your condition.

New School Studies are Presenting Fascinating Results…

PSF-Dallas-2013-5Dr. Moise Levy began his presentation by mentioning the importance of client contact and how conversation and listening is “just as important for healing as anything else.”  Subsequently he felt that the FIRST Patient Forums provided just that: an opportunity for one-to-one interaction.  His remaining presentation was abundant with an overview of current therapies for ichthyosis. Some highlights included:

  • Personalized Treatments – Although they are years away from being available, personalized therapy, also referred to as “boutique therapy,” are on the forefront of therapeutic research for dermatologic disorders.
  • An Overview of Current Therapies & Cost Analysis of Treatments.

(Dr. Levy’s full presentation will be available on the FIRST’s website in upcoming weeks. Stay tuned for announcement.)

Dr.  Keith Choate presented his work via Webex with a live face-time feature Dr. Choate gave a robust and fascinating presentation on the New Frontiers in Discovery – Genetic Approaches to Human Disease.

PSF-Dallas-2013-6Some of the highlights included:

  • Explanation of heritable traits, the DNA genetic code, and how mutations arise
  • Progress in Understanding Genetic Disease
  • Overview of Human Genome Sequencing
  • How advances in technology have led to progress in Genetic Research

Dr. Choate is also currently conducting genetic research at Yale University.  The goal of his study is to understand how genetic mutations cause ichthyosis by obtaining genetic diagnoses for those affected with ichthyosis and comparing genetic data with clinical information. 

“Knowing your mutation will enable you to participate in further research projects on your specific genetic subtype of ichthyosis, and may ultimately be relevant to what treatments will work best for you,” said Choate.

Abundance of New & Old Opportunities for Family Support and Self-esteem building…

PSF-Dallas-2013-7Dr. Meena Julapalli, spoke of her and Dr. Ghali’s involvement and passion for many of the summer camps established for children and families affected with ichthyosis. Camps for children include: Camp Discovery, Camp Brave Skin, and the newly formed weekend camp for families, RoundUp River Ranch.   It was Dr. Julapalli’s perspective that camps are the ideal opportunity for children with ichthyosis to meet and spend quality time together. “It is a chance for the children to thrive and be themselves; a place where they don’t have to be self-conscious”, said Julapalli. 

As she shared some very heartfelt letters written by the children who had attended the camps, one particular phrase jumped from screen, engaging the audience and embodying Julapalli’s very own brand of enthusiasm for these types of opportunities:  “Mom, this camp changed my life!” For more on Camp Discovery, Camp Brave Skin, and RoundUp River Ranch contact

PSF-Dallas-2013-8As the day wound down, and Moureen and I were getting ready to head to the airport, we began to share our thoughts on the meeting, the day, and the entire trip to Dallas. Had it gone as planned?  How might we improve?  What will we always remember?  

A slight and soft spoken young mother from Dallas came over to us. It was no coincidence that we were both deeply moved by the conversation. Although she had the most charming of Irish brogues, she was the type of person who looked kind-hearted, without even speaking a word – and who looked liked the past nine months, her induction into motherhood, and her first year of raising a child with epidermolytic ichthyosis (EI), had been a true test of strength.

It had been the family’s first event sponsored by FIRST – and the decision to attend had initially been accompanied by some reservations. “My husband didn’t know if it would help. But he’s really glad we came. He’s excited and really thinks we should get more involved now.” She hugged us both goodbye, and before walking away was sure to say, “You are doing great work. Thank you both so much.”

Our conversation returned to the young Irish couple throughout our trip home. “Yes, this is what it’s all about. We did our jobs today,” Moe said.

Then, just as I’d nestled into my corner seat at the boarding gate, it happened. In fact it happened so fast, I can barely even claim it as an actual experience. “Don’t worry, I took a picture,” Moe said, noticing the frantic frenzy of napkins and straws and paper bags falling from my lap.

After a good laugh and moment of getting situated again, I ripped the paper from my straw.  “You’re right, this is what it’s all about.” And there I sat, feeling even more inspired by the value and mission of FIRST; more privileged to be a part of this incredible journey and looking forward to next group of families and doctors I may meet.

And…all the while…gazing at Moe’s iPhone, which of course framed the photo of   …  a cowboy.

[For more on Dallas conference visit Confetti Skin, The Beauty Within - where member Rachel See offers valuable insight from an attendee's perspective.]