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Archive for September, 2013

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]


Rainbows, a Symbol of Love, Hope…and Finding a Cure.

"Love was a feeling completely bound up with color, like thousands of rainbows superimposed, one on top of the other.” -Paul Coehlo

Until yesterday, whenever I saw a rainbow, there was no question what came to mind…

…ruby slippers.

However, yesterday, while listening to Chris Wassel Phelps-FriendsforFIRST-2013-1-WEBhere at the office, as she shared her experience at the Dane’s Friends for FIRST Concert, in Cupertino, CA, the iconic image of Judy Garland, Toto in hand, singing with a voice that is arguably unmatched, was replaced.

“The concert was the kind of community support that truly takes your breath away…and it was so moving when Eric Phelps told the story of its symbol,” Chris said pointing to the cover of the concert program.

Moments later, I learned that rainbows are far more important than inspiring the wish of finding “somewhere over.” Yesterday, I found out that at the end of a long bike excursion, while healing from the loss of his son Dane, ( a 3 year old boy affected with severe ichthysosis) – Eric Phelps, came upon a rainbow.  In his own words, here is Eric’s journey:

God’s Promises:

A few weeks after Dane passed, my friend encouraged me to ride the ‘The Tour of the California Alps’ in memory of Dane.  With the support of my wife, Suzanne, and our boy/girl twins, Cade and Chandler, I spent hours each week training for the event, most of the time thinking only about Dane.  In the afternoon of July, 11th, 2009, I climbed Carson Pass, the final mountain stage of the ride, again, thinking only about Dane.  I was blessed to have my family waiting for me at the top of Carson Pass.  We celebrated together; then a rainstorm came.  I rode back down the East side of Carson Pass in heavy rain to where the ride began about 15 miles away.  I again met up with my family, put my bike in the van, and we headed back towards Carson Pass on our way home.  On the side of the road in a meadow below Carson Pass, we saw a rainbow.  We stopped to take a picture but the only cameras we had were cheap flip phone cameras.  Then, a French cyclist (still on his bike), stopped to take a picture.  He miraculously was carrying an amazing camera in his cycling jersey.  He spoke great English.  I told him about Dane.  I gave him my email address and asked if he could email me a picture of the rainbow.  Sure enough, the following week, likely from somewhere in France, he emailed me this picture.  If you look closely you can see a 2nd rainbow above and the color from the main rainbow goes right into the trees on both sides.  Thank you to our anonymous photographer/friend.

Suzanne chose a rainbow as the logo for Dane’s Friends for FIRST.  It is a symbol of God’s promises. In seeing this picture (shown above), I am reminded that our family will, in time, see Dane again.

-Eric Phelps (Dane’s dad)

Dane Christian Phelps (Dec. 21st, 2004-June 25th, 2008)

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And now,  that rainbow has become a symbol of peace and hope for a community that reaches far beyond the region of Southern California. It is a community of friends, families, doctors, advocates, artists and all those who have embraced the message of young Dane: never lose hope for a cure.

It is with much love and gratitude that FIRST extends a warm thank you to all of the performers, attendees, doctors and volunteers at the FlintCenter in Cupertino for the unforgettable Dane’s Friends for FIRST Concert on September 7th.  We continue to be inspired, each day, by the eternal hope and joy of young Dane and the strength of the entire Phelps Family, and are privileged to consider them a part of ours.


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…

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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