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Posts tagged ‘ichthyosis’

Conference, Connections & Life Changing Moments


There is no greater way to express the life changing moments that occur for members at our Family Conference, than to invite you into one of those very moments. Board member and FIRST advocate Tracie Pretak has had gained enormous benefit from attending the conference, but there is one special moment she’d like to share, that stands out a bit more than the rest.

Not sure if you should attend the conference? Consider this:Twenty-six years ago, I had a two-year old daughter with Lamellar Ichthyosis (LI) and we attended our first FIRST conference and our lives would never be the same. Meeting others who understood, who’d gone through what we were going through, and grew up to be successful and happy was overwhelming!

One man I met, Jim, totally changed my thoughts on how to raise Bailey. You see, Jim, who also has LI, told me that he ran cross-country in high school. That blew my mind…because with LI, Jim can quickly overheat.  He said his parents let him try it and found a safe way for him to do it (people would stand along the route and throw buckets of water on him!). He said they tried to give him as normal a life as possible. And so…I did that with Bailey. And when she wanted to dance, on a hot stage under hot lights, I thought of Jim…and I said yes! We took precautions and trained the dance teacher and stage crew on how to prevent and treat heat stroke.

Bailey not only excelled at dancing, she continues to grace the stage at our annual recital. Plus she now is teaching a new generation of little dancers. I’m not sure any of this would have happened, if we hadn’t met Jim.

Fast forward to last year’s conference. We had not been to one in awhile, but decided to go and encourage other families, kids, and teens affected with ichthyosis. On the first day, we walked into the meeting room and who did we see? Jim! Unbelievable! We hadn’t seen him in 24 years! It was so amazing for Bailey to meet the man that “let her dance!” I felt like everything came full circle in that moment.

We were there to offer to others what he gave to us…HOPE. We learned that Jim has actually run a marathon! What an inspiration! It was so amazing to watch Bailey throughout the conference that weekend. I have never seen her so self-assured, so confident. It was worth every penny spent to see her smile; to see her be so open; to see her inspiring the kids and teens and parents and grandparents!   It was such an amazing weekend of connecting that I don’t think we will ever miss another one.

Come to Indiana…we want to meet YOU!!! – Tracie

A Passion for Patients


As many of you know, FIRST is closely affiliated with a team of unique medical professionals, from universities and hospitals around the world, who are dedicated to the research of ichthyosis.  Not only does their dedication and commitment offer our community a ray of hope for a better tomorrow, but in turn we have the opportunity to provide them with patient insights, research grants and the emotional support necessary to continue their quest for better treatments, and an eventual cure for ichthyosis. We reap the rewards, every single day, of embracing a “one team” culture with this remarkable group of physicians.

In fact, on November 20 of this year, FIRST had the good fortune and rare opportunity to meet with the entire Yale University ichthyosis research team, face-to-face, as they shared their special “patient first” philosophy, their passion for combining multi-disciplinary scientific discovery with real-world patient treatments, (a field known as translational medicine), and what these doctors envision is possible for the future of ichthyosis research.

Rita Tanis, Evan Fasciano

Rita Tanis, Evan Fasciano

One of the goals of the visit to Yale was to video tape individual interviews that FIRST could use in various presentations, either to solicit a new donor, enlighten our current members, or engage others who are not familiar with the ichthyoses. The video “campaign” would introduce the disorder of ichthyosis, the doctors spearheading the field of ichthyosis research, and the idea that their support will bring these doctors that much closer to better treatments – and perhaps even these advances in research would have an effect on other diseases as well.

As the day unfolded, it was quickly evident that these doctors, Dr. Leonard Milstone, Dr. Keith Choate, Dr. Brittany Craiglow, and Dr. Christopher Bunick, who are all approaching the same disease from differing angles, were inspired by the exact same component of the field of medical research: the patients.

When asked about his decision to go into the field of ichthyosis research, Dr. Keith Choate shared not only a profound story of clinician and patient interaction, but his exact moment of certainty-his very first time meeting an ichthyosis patient in Dr. Mary Williams’ clinic, one of founding physicians of FIRST. Although his initial reaction was that ichthyosis presented itself rather mildly, the next moment of his life would carve the pathway for his entire career. “As she took the layers of make-up off, she began to cry. It was clear that this woman was severely affected. And that ichthyosis was affecting this patient’s life in a fundamental way. She felt ashamed and I could see that,” he said.  “People talk about scientific epiphanies and the moment of knowing. I knew right then that this was important work, and that this was exactly what I wanted to do – research in ichthyosis.”

Dr. Brittany Craiglow, initially entering medical school with the intent of becoming a child psychiatrist, discovered during a volunteer mission at Camp Discovery, a specialized sleep-away camp for kids with skin disorders, that a physician-scientist track in dermatology might better suit her desire to connect and care for families and children. “When you’re a kid and you’re sick and everyone else can see it, it’s right there on your skin, it adds a whole other element. So it’s important to treat not just the condition, but the whole person. I love my job because I can do just that. I love building relationships with patients and, at the end of the day I just want to be a good doctor for them.”

The physician-scientist possesses the capacity to envision the entire process – a mastery of biotechnology as well as a passion for face-to-face interaction and treatment of patients and families.  As we stood in Keith Choate’s laboratory, surrounded by cameras, lights, and an audio boom, we were overwhelmed by the feeling of privilege; after all, we were among this unique breed of four passionate physician-scientists as they discussed the latest computer programs for genetic sequencing, the electron-micrograph, the Yale Center for Genome Analysis, and with equal enthusiasm, interacted with their patients and families right down the hall.

Dr. Leonard Milstone, a veteran doctor in the field, was as energized and excited as any new doctor entering the field of ichthyosis research today.  Not only does he bear an obvious warmth and affection for his patients, two of whom had joined us for the day, but he possesses a truly remarkable willingness to support and mentor the progress of the next generation of ichthyosis scientists in any possible way.  “It’s like the perfect storm. It is so very rare to have three young people at the same place with interest in the same rare diseases, each contributing  complementary expertise to help these patients,” he said with regard to Drs. Choate, Craiglow, and Bunick. “Plus, we have an unusually large and devoted group of ichthyosis patients, and the environment at Yale provides unique opportunities for these collaborations to flourish:  a Genome Center that has a special interest in rare diseases; an outstanding group of structural biologists; a high throughput screening facility, and a group of additional young skin scientists who utilize the latest technologies to understand skin disease.   And the final critical component is FIRST, a remarkably effective organization that grabs your attention and makes you want to do more while supporting each of us emotionally in terms of encouragement for the science and the clinical work that we do.”

Dr. Keith Choate Dr. Britt Craiglow

Dr. Keith Choate
Dr. Britt Craiglow

The doctors all agreed that medical research itself is advancing at lightning speed. “Questions that would have taken decades to answer, or thought impossible to answer, now may take only a few years, or even months,” added Milstone.   An equally enthusiastic Dr. Choate, with regard to the speed of medical advancement, offered his own vision of what may be not too far down the road. “What I see and hope for the future is a post-genomics era. Genomics is the key that unlocked the door for us and opened the possibility of identifying all the genetic mutations of ichthyosis of all types. We now have the information and are using it with next level biology such as high-throughput chemical screening, identifying natural compounds, synthesizing compounds, and creating new medicines to treat these disorders. We are leveraging genetic insights to make a difference in patient’s lives.”

Dr. Chris Bunick

Included in our physician-scientist interviews was Dr. Chris Bunick, a unique physician-scientist among dermatologists because of his application of x-ray crystallography to the field of dermatology research.  Dr. Bunick brought an even more expansive view to the notion of what can scientifically be achieved to help patients.  “X-ray crystallography technology enables determination of a 3-D image of what a protein looks like in living cells, therefore I am able to see the structures of the proteins that make up the skin barrier.  This technology is going to greatly improve our understanding of the science behind skin function,” he explained.  When asked about his futuristic vision, Bunick stated, “What I imagine is creating a niche of dermatology research, “molecular dermatology” so to speak, and one by one, determining 3-D structures of proteins highly relevant to normal and diseased skin.  I am in a position to identify and to tackle many disorders in the field of dermatology from this structural perspective, and my hope would be translation of this work into new classes of topical therapeutics to help patients with skin disorders.”

The importance of research funding was another topic that continuously surfaced throughout the day, and it is clearly encircling the thoughts of these physicians, day to day, as well. “But it’s only my two hands and we need more funding and more scientists working together to achieve this,” Bunick added.

But it was the words (or lack thereof), offered by the patients themselves, with regards to their experience with this team of Yale physician-scientists, that illustrated the results from long hours in the lab and the tireless years of dedication, in the most meaningful way.  “There really are no words for what they have done for me; they saved my child’s life. They knew exactly what Evan needed and exactly what to do, and if they weren’t there by our side, there’s a good chance Evan would not be here today,” remarked an emotional Dianne Fasciano, as she spoke about the days following the birth of her now 3-year old son Evan Fasciano, affected with Harlequin ichthyosis. “I have the best doctors in the world, and they are on it, always ready to help at a moment’s notice. I am so lucky.”

Rita Tanis, a middle-aged woman affected with lamellar ichthyosis, also spoke of her unique kinship with the doctors at Yale. “I have seen many doctors over my lifetime. But these doctors here, they really get it.  And they have real empathy. There is no need to keep explaining it to them, as they really understand the condition in a way no one else ever did. Now there is so much hope for better treatments, and even for that big, big word that we’re not supposed to talk about, a cure. It feels like it is right there in front of us. It’s palpable.”

Our day at Yale inspired many new stories for FIRST to share with members, supporters, the media, and the world. In upcoming months, we look forward to bringing you more articles and videos discussing our powerful advocate-doctor relationships, our collective vision for the future and more details about the cutting-edge research being conducted in both lab and clinical settings for ichthyosis research.


We Asked. You Answered!

Recently we posted a question on Facebook regarding the best solutions for putting lotion on an infant or toddler with ichthyosis, (so it doesn’t feel  like a wrestling match!) The answers were so remarkably unique, we not only wanted to say thank you for your creativity, but we also wanted to share these helpful tips with the entire FIRST family – particularly those caring for a child with ichthyosis…

  • DVD player and an Elmo movie
  • IPad and we watch music videos on YouTube
  • I sang songs to my daughter. When she got older, we played name that tune. She is in 6th grade now and still asks to play name that tune when she is soaking in the tub.
  • Sing to them! Or let them run around while you chase them and apply their lotion… This gives you both a good workout.
  • Center yourself with deep breaths before and during applications. Be aware of your facial expressions and tone of voice and seek to impart calmness and empathy. If humor is at your finger tips, giggle with your child as she or he squirms. Use a soothing lullaby or music to accompany you. Give your toddler a plastic doll and lotion so they can play at being the one in charge. Give lots of time for open ended play.
  • Let them “help” with a little coconut oil so if it goes in their mouth it’s safe.
  • Try to turn it into a fun game.
  • Make up creaming songs with all the body parts.
    “This is how we cream our tummy….”
  • Give them a toy to hold. Sing a song. Tickle in between rubbing.
  • My husband and I make it a game and have our 23 month old help us out. She’s gotten to the point where she will tell us where to put it on next.
  • If they aren’t light sleepers, while they slumber. Otherwise you need 2 people, one to hold them still, the other to apply. Singing was always a way to improve an arduous task.

Any more tips for “lotion time?”  Contact: Mneville@firstskinfoundation.org

Is Ichthyosis Ruining Your Wardrobe?

No matter what type of appearance challenges one may face, there is something we can all agree on – stepping into fresh, clean clothes, that are well fitting and soft to touch, can lift our spirits and boost our confidence.   However, finding those comfy, stylish outfits, and keeping those fabrics clean, can be a real challenge for those affected with ichthyosis.

As many of you know, the daily skin care treatment for ichthyosis requires the use of large amounts of emollients on the skin.  This, of course, is great for the skin, but can be very harsh on many types of  clothing. Not to mention, the beating taken by washers, dryers and, of course, the wallet.

Last week, Moe Wenik hosted a FIRST to Know conference call on this very topic.  The discussion was quite remarkable, as members were more than happy to share their ”trial and error” experiences and offer a host of new tips, information, products and resources. We even created a new “Laundry Care” Resource Sheet  with everything you’ll need to not only find and care for a wardrobe that fits with your personal style, but also…

…with your ichthyosis.

Any other laundry care tips?  Email mneville@firstskinfoundation and let us know!


Carly Findlay, Big Ambitions, Strong Work Ethic…and a Loud Laugh!

Carly Findlay, a young Australian woman, affected by Erythroderma and Netherton syndrome, has endured the daily stares and insensitivity of strangers, for as along as she can remember. She has walked the unpaven path of rare disease and experienced a side of life that many people will never know –  and still yet, Carly greets each day with an open-armed optimism, and an enviable zest for life.

FIRST has been following Carly as she courageously and candidly shares her experiences, and her resonating words of wisdom. Her weekly blog takes us to the most unexpected places – switching the lights on and opening our eyes to not only a whole new side of the world, but a new side of life. Carly’s side of life: the bright side.

Today, we are delighted to have Carly Findlay share the secret of her optimism and her fool proof recipe for resilience:

I present with a red face, a sore body and scales that leave snowflakes on every surface – it’s ichthyosis – if you want to be really specific, it’s a diagnosis of erythroderma at birth and Netherton syndrome at age 10. I also present with a sunny disposition, a positive “this is just how it is” attitude, a zest for life, big ambitions and strong work ethic, and a loud laugh. I don’t so much notice the stares anymore – my friends and family do. I tell them “keep walking, don’t worry about the stares.”  And we do. The stares don’t stop me. I’m confident enough  to hold my head up high.

I get asked a lot about my level of positivity and resilience , despite my ichthyosis. Doctors, colleagues, other people with a wide range of disabilities, parents, audiences I write and speak for – they all ask. Some have told me they could not face the world if they were in my skin.

I think it comes down to being raised by very encouraging parents, and having a strong sense of self worth and acceptance of my ichthyosis. This is the life I’ve been given and I’m going to live it to the full. It’d be tiring to let the hard times get to me. I’d be lost without a full life. I believe happiness is a choice, and with happiness there’s hope. I’ve chosen to make the best of what may have been a difficult situation.

As a child, it was hard. I tell young people and parents of babies and young children with ichthyosis this. And then I tell them that it gets better.   I want to show people that life can be pretty good living with a visible difference.

I can have a big laugh at myself (and the funny situations when people ask me what happened to me). Living with ichthyosis is pretty funny. When I traveled to America, I had four members of the LAX bomb squad come to investigate my jar of prescribed paraffin because they thought it was a safety threat (despite a letter from my dermatologist and liaison with the airline prior to my trip). It was hard not to laugh!

I also have the following tips for staying positive, (as originally provided to FIRST member DeDe Fasciano and posted to her blog, http://ouryoungwarriorevan.blogspot.com):

- Try not to compare yourself with others (or parents, don’t compare your kids with other kids). Your progress is your own. You may look different but you’re perfectly you.

- Have a good relationship with your doctor. Hopefully you’ll be seeing a dermatologist. If you’re not, ask your general practitioner to refer you to one immediately. See them regularly. Listen to their advice, but also let them know you want a say in your treatment. You’ll know what feels best for you. As you grow up, you’ll get to know your skin pretty well.

- Try to stretch yourself as you mature. Get out there and have a go – play sports (though this is my least favorite thing!), join a group like cubs or girl guides, sing in a band. You’ll make heaps of friends and learn new skills. The best thing I did was get a part time job in a department store age 17. Working in a public role helped me become more confident, and it also forced me to answer questions about my skin in a calmer and more professional way. I made life long friends at this job. I wished I’d started working earlier.

- Find a support group. Your local hospital may run one. You may find one online. You need not even talk about your ichthyosis – you may want to just talk about your interests. Remember though, everyone’s experiences are different and what works for your friend in the support group may not work for you – check with your doctor before trying something new. And don’t let others’ issues with their illness bring you down. Surround yourself with positive people

[Carly Findlay lives in Australia. She is an award winning writer, documenting what it's like to live with ichthyosis and a visible difference. She sometimes speaks to a large audience, presents on community TV and does the odd radio show. She says the best part of having ichthyosis is that paraffin and constant skin renewal keeps her looking 23! Ichthyosis is better than any anti-ageing product.

Read Carly's blog at http://Carlyfindlay.blogspot.com]


Are you a Young Adult With Ichthyosis?

 

Then you’ve come to the right place.  FIRST, the leader in advocacy and support for those affected with ichthyosis, is officially forming a group of young individuals that will address the most relevant issues and concerns, faced by those between the ages of 18 to 30.  Whether it’s job searching, dating, or even finding the type of make-up that works best with your skin condition, our young adults with ichthyosis (also known as YAWI), will be bringing you tips, advice, events and online resources to help you through one of the most transitional times of your life. At the moment the group is small in numbers and there’s plenty of opportunity to get involved.  

Today, we invited FIRST member Greg LiCalzi, a YAWI himself and the originator of the YAWI concept, to offer you a little more insight about this exciting new chapter for FIRST…

________________________________________________________________________

Hello FIRST readers! I would like to introduce myself. My name is Greg LiCalzi. I am a 31 year guy with lamellar ichthyosis and  I am proud to lead a new group at FIRST focused on young adults with ichthyosis.  I live in New York City with my wife and 4 month old daughter, Colette.  I have struggled with ichthyosis my entire life and feel privileged that FIRST has given me this opportunity to help start this amazing group. I think we can really help each other out.

“Young Adults With Ichthyosis”, what a mouthful! From now on, let’s just call ourselves YAWI.

 Who is a YAWI?

A YAWI is someone with ichthyosis between the ages of 18 – 30.  This is an important age when you are making many vital decisions in your life.  During these years many folks are dealing with the highs and lows of leaving high school, moving on to college, finding their first job, dating, marriage and ultimately starting a family!

So much going on – not to mention a little skin condition called ichthyosis! It is not easy and sometimes you need support from others who really know what you’re going through. That’s where YAWI comes in.

What is the Group?

This group will serve as a support network for all YAWI. We hope to be with you during the good times, the bad times, and all those in between.   Collectively, we have mountains of advice, experience and information.

But ichthyosis, as you know, is rare.  Not too many people have it and without some sort of database, finding a fellow YAWI is like finding a needle in a haystack. I live in New York City, home to over 8 million people.  Of those 8 million people, 40 people have lamellar ichthyosis.  Forty people!  One out of 200,000!  I consider myself social BUT it will take me a long time to meet 200,000 people

Our hope is to keep a database including the following:

  • Name
  • Age
  • Location
  • Type of Ichthyosis
  • Contact Information

This database will serve as a central source of communication between YAWI. It will be a private list monitored by me and YAWI Group leadership.  No one will have access to this list.  With this database, we can set up connections. For example:

  • Hold YAWI breakouts at the family conference and regional meetings.
  • Depending on locations of those that join, arrange get-togethers in convenient geographic areas
  • Plan conference calls on specific topics (i.e., starting college, job interviews, dating, etc.)
  • Develop content for YAWI blog, newsletter column, and other YAWI communications
  • Create a closed Facebook group to talk and exchange ideas, share concerns

I lived the first 29 years of my life without meeting someone else affected with ichthyosis, I think it is important to make connections with others who know EXACTLY what you are going through.

What does the future hold?

My hope is that you share your information with us and become involved.  This is a tough disease.  I have been LIVING with it for 31 years. We all LIVE with it.  If you don’t have it, you will never understand the emotional and physical drain that it can be. This YAWI group will allow us to talk to people first hand who are also living with ichthyosis. I hope the YAWI group can allow us to help others and be helped by others.

This is awesome and I want to be involved!

The YAWI group is forming right now. Get in on the ground floor and help jumpstart our future.  You’ll find more information and a sign-up form on our YAWI web page.

OUR FIRST YAWI CONFERENCE CALL IS SCHEDULED FOR MONDAY, SEPT. 16th at 8:00 pm EST.

Sign up to find out more!

Thanks so much!

Greg LiCalzi

 


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 confettiskin.com, 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!


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!