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Should Grandparents & Extended Family Attend the FIRST National Family Conference?

 

 

At some point in their journey with ichthyosis, individuals and parents with affected children will need assistance, both physically and emotionally, from someone other than their medical practitioner. In difficult times, a reprieve from the day-to-day, a shoulder to lean on, or simply a trustworthy listener, can truly be a life-saver. More often than not, this type of support comes from extended family.  And although it can be stressful, turning to family in these types of situations may not only be therapeutic, but can create unbreakable bonds for parents, grandparents, and siblings.

Perhaps you are the grandparent, aunt, uncle, or sibling of an individual affected with ichthyosis, and are contemplating whether or not to attend the upcoming FIRST National Family Conference?  Over the years we have met countless individuals who were contemplating this very same decision, many of whom ultimately decided it was best to attend the conference, not knowing really what to expect, or if they would gain any benefit at all. Cina,Sean-Portia-Jolie-Mary-Dave2

Mary and David Cina, grandparents of  Myles and Portia Cina, affected with ichthyosis en confetti said, “We attended and will continue to attend FIRST conferences to support our son, daughter-in-law, and grandchildren.  We have learned a lot and enjoyed meeting other families, learning their challenges, and how they have dealt with them.  The doctors provide a wealth of knowledge and are very approachable, willing to help and teach all attendees.” (The Cina Family pictured left)

 

Chrissy See, a sibling of member Rachel See, also affected with en confetti ichthyosis, is not only attending the conference in Indiana this year, but has played a pivotal role in helping to gather items for the conference fundraising raffle. “My family has always been a huge inspiration, and recently my friends, respected colleagues, and even “strangers” have become my new source of inspiration for my involvement with FIRST. In fact sharing on our company community webpage to 200 work friends created generous donations and support. I am looking forward to attending the FIRST National Conference because it will also be a special opportunity for me to learn and grow from others. Awareness is the first step to curing ichthyosis and I am inspired by others to take that next step for my family.” (Chrissy See pictured right).

And Kellie Wilson, sister of Shannon Hamill, and aunt of Lauren Hamill affected with harlequin ichthyosis, has been by her family’s side siKellie Wilson, Shannon Hamill, Kelly Klafternce day one. “ My niece Lauren was born with harlequin ichthyosis. Two words no one in my family had ever heard before. Now the word ichthyosis has become familiar to me and my family and it is not as scary anymore, thanks to the FIRST Family Conferences.  It was comforting knowing that they were not alone and that there was a whole community out there for them to learn from and to share their stories with. The first time in Chicago I was there as more of a supportive role. I wanted my sister and her husband to attend as many discussions as possible without having to worry about Lauren. However, this will be my third conference and I am looking forward to seeing everyone again. ”

 Although there are numerous opportunities for networking and education at the family conference, in the end, it seems that sometimes simply “being there” for a family member may just be the most meaningful kind of support you can give. (Kellie Wilson, Shannon Hamill, Kelly Klafter pictured left).

 

 More Conference Information.

 

 

 

 

Topical Tazarotene for the Treatment of Ectropion in Ichthyosis

Many individuals affected with ichthyosis cite ectropion – an abnormal eversion of eyelids – as one of the most cosmetically displeasing aspects of their skin disorder. And although ectropion almost universally improves beyond the neonatal period, it can persist throughout life and medical consequences including keratitis,* conjunctivitis,* and epiphora* can ensue.

“Patients with ectropion usually try several different types of drops, creams and even surgery, with varying results,” says Dr. Brittany Craiglow. “Surgery can be a risky option, with a high rate of recurrence, or cosmetic results that are unsatisfactory. After our recent findings we are encouraging doctors to try less invasive alternatives, like topical tazarotene and other topical retinoids, as another potential treatment option.”

Dr. Craiglow, a former FIRST ichthyosis fellow and now an instructor of Dermatology at Yale, is the newest member of a team that includes Dr. Leonard Milstone, Chairperson of FIRST’s Medical and Scientific Advisory Board, and FIRST-funded researcher Dr. Keith Choate. This group is working to gain a better understanding of the genetic mutations that cause ichthyosis and to develop better treatments for ichthyosis. They have used topical retinoids on the lids of many ichthyosis patients and recently reported their experience treating a 77-year old woman with autosomal recessive congenital ichthyosis and long-standing bilateral lower eyelid ectropion. The observations were published at JAMA Dermatology Network.  An abstract of their observations is as follows:

Importance: Ectropion is a complication of certain subtypes of ichthyosis and is often associated with substantial medical and cosmetic consequences.  At present there is no standard of care for the treatment of ectropion in this population. Retinoids cause dyshesion and thinning of stratum corneum, thereby reducing hyperkeratosis that likely underlies ectropion in patients with ichthyosis.  As such, retinoids provide a potential effective treatment for ectropion in this group of patients.

Observation: We describe a patient with recessive ichthyosis for whom daily application of topical tazarotene produced rapid and persistent improvement of bilateral lower eyelid ectropion without adverse effects.

Conclusions and Relevance: Additional studies will be necessary to more fully and systematically address the safety and efficacy of topical retinoids for the treatment of ectropion in patients with ichthyosis; however, this case illustrates that topical tazarotene and other retinoids provide a potential treatment option for ectropion in this population.  We encourage clinicians to explore medical therapies as alternatives to surgical intervention for the treatment of ectropion in patients with ichthyosis.

Dr. Craiglow also noted, “It’s a good idea to start out slowly, as topical retinoids have the potential to be irritating. Patients can try the retinoid on one eyelid and compare it to the other to see whether or not it is effective” Dr. Craiglow also stated, “It is very important that this treatment be done under close supervision of a knowledgeable physician.”

FIRST will provide updates to this clinical study, as they occur.

Brittany G. Craiglow, MD; Keith A. Choate, MD, PhD; Leonard M. Milstone, MD
JAMA Dermatol. 2013;149(5):598-600. doi:10.1001/jamadermatol.2013.239.


*keratitis def: inflammation of the cornea — the clear, dome-shaped tissue on the front of your eye that covers the pupil and iris. Ref. www.mayclinic.com
*Conjunctivitis def: Pink eye. An inflammation or infection of the transparent membrane (conjunctiva) that lines your eyelid and covers the white part of your eyeball.
*epiphora:def: watery eyes. Ref. www.mayoclinic.com

It’s Time to Do Something.

 #itstimetospeak

NIH Budget Cuts, Government Shutdown, and What You Can Do

The recent government shutdown has added yet another layer of challenges to the rare disease research community, as the shutdown includes the federal agency, National Institutes of Health. New research grants aren’t being processed at this time and frustrated researchers are grinning and bearing as their attempts at trying to get funding for their projects, or support for ongoing clinical trials, are on pause.

Hopefully, the shutdown is, at best, a brief blip on the screen – and at worst, a temporary annoyance. Of greater concern is the earlier debt-limit proposal back in August 2011 and the implementation of the “sequester” cuts in early 2013 – a problem that’s not going away any time soon. In fact, under sequestration and the current budget caps, the NIH was cut by $1.7 billion this year and funding for research is scheduled to face another round of cuts in FY14 and beyond.*  

And the cuts have, of course, hacked at our very doorstep.  Dr. Keith Choate, one of our FIRST-funded doctors and member of our Medical & Scientific Advisory Board, and an enthusiastic participant in FIRST conferences in events, mentioned during our regional conference in Mahwah, NJ, that his lab faces significant sequester-related cuts. It’s possible he may lose funding for a grad student in his lab, and with some of his current funding expiring in November, he’s expecting to have to make even further cuts to his lab, which means that he won’t be able to achieve as much as he had hoped.

Dr. Choate’s Gene Discovery Project at Yale has made a huge difference in the lives of many families affected with ichthyosis, and that project has discovered new genes relevant to ichthyosis. Isolating these different genes is important because it means we can tailor treatments and potential cures to specific mutations.  But, now, it’s up to us to be sure every voice is heard and that these doctors are given every possibility to continue their work with as little interruption as possible.

 

So what can you do to help?

 

Take action. Because it is a rare disease, ichthyosis is not well recognized, understood or researched. Increased education of our communities and elected officials will help gain the much needed attention, and hopefully lead to a better quality of life for ichthyosis patients, better treatments, and possibly even a cure.

As members of the NIAMS Coalition, we have been advocating for the following funding levels in the FY14 appropriations bills: $32 billion for the NIH and $541 million specifically for NIAMS, the branch of the NIH that supports skin disease medical research.  FIRST is making every effort to be sure that your voices are heard to those making the decisions that will affect your very future. But we need your help. You are the ones living the unique experience of ichthyosis, and struggling with a skin disorder, for which, currently, there is no cure.  We encourage you to write to your local paper and tell them your story; inform your local district representative or state senator of your situation; expose as much detail about ichthyosis, and how it has affected your life.  (Sample Letter)

 

Not sure who to contact?

House of Representatives’ website: www.house.gov.  Type your zip code into the box in the upper right hand corner to find your representative.

 

State Senate: www.senate.gov. Enter your state to find your senator.

 

The louder we are, the more likely we’ll be heard. Follow #itstimetospeak on Twitter for self advocacy news and information from FIRST.

 

* 2013 AADA Legislative Conference  



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.

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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!


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: www.genetests.org

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!