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Archive for August, 2013

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.