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Posts tagged ‘rare disease support’

Do what you love and your skin will follow.

As many of you affected with ichthyosis already know, at times, this condition can present enormous challenges. And yet, as many of you also know there are still other times when ichthyosis is simply a background hum to the music of life.  Member Brian Gass, affected with CIE, is living, walking, and hiking proof that although his ichthyosis is a part of his life’s journey, it follows his lead, trailing far behind his pursuit of passions, dreams, and interests.

Recently Brian contacted us to let us know he’d be doing a little traveling this summer. Well, actually a lot of traveling – 2,650 miles up the spine of the Sierras from Mexico to Canada, to be exact. Although he is an avid hiker, racking up “over a thousand trail miles on three continents,” this journey will prove to be a journey of his lifetime. And for the benefit of others affected by ichthyosis who share in his love of the outdoors, periodically throughout the summer he will be reporting back to FIRST and on his blog:   (http://hikeonthegoodfoot.blogspot.com/).  Not only will Brian be sharing an up-close view of the most breathtaking terrain, but he will be sharing everything he learns and experiences about the care and safety of his skin along the way.

We are happy to share Brian’s mission and his message: do what you love first and your skin will follow. 

Here is a personal note from Brian with more information regarding the details of his upcoming adventure.

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

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

 


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.

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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).