For Ichthyosis Awareness Month 2019, we asked our members to answer two simple questions: Pick a point in your life and write about your challenges or successes, and How has FIRST impacted your life? We present their honest, heart felt answers here. Some responses are difficult or painful to read due to some difficult circumstances in their lives, but in the end these member stories are all so truthful and inspirational. One thing is for sure, FIRST members are resilient and they are living each day to the fullest. Ichthyosis and related skin types is a part of who they are, but it does not define them.

For the month of May, please share what you are doing for Ichthyosis Awareness Month on social media. Spreading awareness helps us all.  #ichthyosisawareness #FIRST #ichthyosis #IAM19

Ryan

Pick a point in your life and write about your challenges or successes.

Ichthyosis hasn't held Ryan back from traveling across the globe to Morocco. "Family and lifelong memories sum up my travel really well.  I travelled with my college-LaRoche College.  Prior to the trip, I only knew one person, but by the end, I had a family of 11.  Our trip consisted of four cities: Rabat, Fes, Marrakesh, Casa Blanca.  After dinner in Fez one night, a show was put on and I actually belly-danced.  Everyone was loving it and having a blast.  I was really comfortable in my skin because of the people who I was with.  We also got to witness the making of olive oil and pottery.  This was a trip of a lifetime and something I would do again. I never once felt worried or unsafe during the whole trip.  Everyone in Morocco was very welcoming and grateful that we came."


Anonymous

Pick a point in your life and write about your challenges or successes.

Back in 1975 we had no idea that ichthyosis was inheritable, nor did we do genetic testing.  Our daughter was born, with skin like wet tissue paper and blisters.  The nurse even suggested that we should not have any more children.  But,  I believe in children more than I believe in skin conditions.  Our next 2 daughters had the condition and our next 3 daughters did not.  In addition, 7 of 26 grandchildren have it too. We manage, we stay close to each other, we love each other. We know that people who mind, don`t matter and people who matter, don`t mind.   The condition only affects our time. We work and plan ahead for it and do everything we want to do anyway.  As a family we seek to be kind, gentle and discerning.

How has FIRST impacted your life?

FIRST is our safety net.  We are three generations now and manage fairly well.  But we know FIRST is there if we need them.


Christine

Pick a point in your life and write about your challenges or successes.

There are many, but probably the most terrifying time in my life was wondering if I would find someone to love me, be with me and create children with me. I was very fortunate to meet a man who, when asked about my ichthyosis, he said:  "Since I met Christine her skin condition has never bothered me. I`ve never considered her any different from anyone else. We have 2 beautiful children, Michael who is 34, and Suzanne who is 32, and the most awesome 6 year old grandson. We will celebrate our 38th wedding anniversary this July."  On the flip side, I don`t know if I can say I was happy to be born with CIE, but I know I can say that having this disease has made me strong, has made me do things that I might never have otherwise, has made me reach and go beyond goals I might never have had. I have grown to be a confident woman who has had many achievements; in family, work and the community. I have never really talked about CIE with any of my friends or coworkers. Many of them have seen me grow from a naive young woman to a strong assertive adult who has accomplished many things in her life. I had a career in public service, I volunteer with numerous organizations and I am a Town Councillor in my beautiful Town of Conception Bay South. Just a quote from my mom:  "my pregnancy with Christine was the most planned and with the most unexpected results". 

How has FIRST impacted your life?

FIRST has given me a voice! A voice to support others. Sharing stories,  comparing life`s challenges and accomplishments.  I am a member of every ichthyosis Facebook group and am amazed at so many in all parts of the world who either have ichthyosis, or are raising a child affected.  Knowing there are others out there that know what you are going through, give you support, give you suggestions, is just so wonderful! I am excited for our upcoming patient forum in Toronto this July which is being co-sponsored by FIRST.


Annalie

Pick a point in your life and write about your challenges or successes.

Annalie, our 9 year old daughter, loves school, her family and friends, dancing, playing the piano, pushing her siblings' buttons, and so many other things. Annalie is creative, artistic, stubborn, and independent. She feels she is strong in math, but she has also developed a love for reading. Annalie has dry, flaky skin, but that is such a small, tiny part of our amazing little girl.  When Annalie was born in 2009, we had never heard of Ichthyosis. Annalie was about six months old when we were told by a dermatologist that Annalie had ichthyosis, so of course we did what any parent would do after leaving the doctor's office with an unfamiliar diagnosis, we searched the Internet to figure out the meaning of the word that would label our daughter for the rest of her life.  At first that label, ichthyosis, was all I could focus on and worry about. My first thought when meeting someone new would be, "What are they going to think about her skin?" It took me several years to finally break free from my constant worry about the thoughts of strangers. When dropping off Annalie at her first dance class of a new school year, I introduced Annalie to her new teacher, gave her a hug and a kiss, and left the studio to run some errands. I broke down in tears in the middle of the grocery store when I realized that I did't even think to tell Annalie's new teacher about her skin. My worries of acceptance and understanding had been pushed to the back of my mind, and I was fianlly able to focus on Annalie, the little girl, not just the label that described her dry, flaky skin.  Annalie is bright, confident, funny, and I am so proud to be her mom. She has taught me so much about life and acceptance, and I cannot wait to see the amazing things she will accomplish in her lifetime. I know she will do great things, and I will be her biggest cheerleader as she goes out into the world with a kind heart, independent spirit, and the confidence in knowing that what truly matters most is not what you see with your eyes, but what you see with your heart.

How has FIRST impacted your life?

We have met so many wonderful people through FIRST, and I do not know what I would have done when we started this journey without the support and advice of other parents and individuals affected with ichthyosis. The information provided by FIRST was instrumental when educating administrators and teachers when Annalie started school. The advice and support through FIRST's many Facebook groups has helped us tremendously as we continue to navigate through new milestones and stages of life. I am so thankful for the connections we have made through FIRST, and I appreciate all that they do to bring awareness, acceptance, and support to our community.


Carol

Pick a point in your life and write about your challenges or successes.

Age 12 I had my first flare. Mom & Grandma told me I had poor skin like them. I tolerated being teased in school & throughout my teen years for being smelly or dirty. I knew there had to be more to it than "poor skin". At 18, I went to my first dermatologist and had a biopsy which confirmed Darier disease. I was relieved to know there was something genetically wrong & it wasnt my fault.

How has FIRST impacted your life?

It's made me feel more comfortable in my own skin and not to be concerned about other peoples opinions.


Eliza

Pick a point in your life and write about your challenges or successes.

When my daughter was born the doctors didn`t know what was wrong with her, they took her by ambulance to a children`s hospital 3 hours away. We followed. We spent two weeks there until they figured out what she had.

How has FIRST impacted your life?

We really enjoyed the patient support forum that was in our area. We hope to be able to go to the national conference sometime.


Ian

Pick a point in your life and write about your challenges or successes.

When Ian was born we had no idea what ichthyosis was or how our lives would be impacted. We were living in South Eastern New Mexico and the dryness in the air was having a severe impact on his skin. I would go through almost two jars of Aquaphor a week. I didn`t even know about FIRST until after we moved back to Texas. Ian was around a year old when I saw a pediatric dermatologist. She is the one who told me about FIRST.  It was then the flood gates of support opened up. We were struggling with his skin regimen, finding diapers that didn`t cause awful rashes, and the routine care was becoming draining on me as a new mom. Ian would constantly get MRSA in the diaper area. I fought with pediatricians and WIC professionals about him being under weight, not to mention the criticism from outside of my circle. People would comment at the store how tiny he was for his age, I should feed him more or why did I allow him to get sunburned. Sometimes I wanted to scream "It's ichthyosis, look it up"  Even though Ian`s case is much milder than most he struggles tremendously with heat and cold intolerance. I never thought he would be able to play sports or play outside like other kids. His strong will and determined spirit showed me how wrong I was. He is 11 now. This fall, if we stay on track he will be going for his black belt in Taekwando.

How has FIRST impacted your life?

If it wasn`t for FIRST I would have never know about the Aquaphor program or that there are companies that make cooling vests for kids. When Ian was a baby we went through two jars a week. Moving back to Texas helped decrease the amount we had to use. We were struggling financially during his baby and toddler years. It was a burden lifted off of our shoulders when I was introduced to the  program. I remember getting our first case in the mail. It felt like Christmas. When I saw how many containers were in the box I wept tears of joy! Ian was around 3 years old when we received our first cooling vest that was actually gifted to us by dear friends who had learned Ian overheated the summer before during Memorial Weekend where the high was only 76°. This couple didn`t want Ian to go through another summer of having to stay indoors all the time. I would have never known about the cooling vest if it wasn`t for the families through FIRST. Receiving his vest opened so many doors of opportunities. Zoo trips. Going to the park. Easter Egg Hunts outdoors. School field trips, recess, P.E. Not to mention Taekwando. I`m so thankful for FIRST and the support you give.


Calvin

Pick a point in your life and write about your challenges or successes.

Calvin has dominated the wrestling mat this year.  It is his second year officially wrestling, but he has been around it his whole life.  (His father Matt coached at Pitt University for years.)  Calvin's parents have always had the philosophy that he can do anything.  He has never been held back because of his skin, just minor accommodations if necessary.  Wrestling has helped him to become a very happy and confident kid.  He's had 10 pins so far this year and recently placed 1st in a tough tournament!  We are proud of you!

 

 


Nadine

Pick a point in your life and write about your challenges or successes.

On April 13th, I got to run the Ville to Ville Relay Race with some of my running friends. Ville to Ville is a 75 mile, relay race that goes from Asheville, North Carolina to Greenville, South Carolina. Picture yourself and 5 of your friends (plus a driver) all in a van as you take turns running up and down a ton of hills! Each of the runners runs twice and my two legs were 5.28 miles and 4.85 miles respectively. I didn't train as well as I normally would have for a race because I came down with shingles halfway in my training. Thankfully I caught it early and it cleared up much faster than expected. Anytime I run a race, I have to be mindful of the temperatures. Since I have ARCI-lamellar ichthyosis, I don't sweat so running in high heat can be dangerous for me. Thankfully, I've dealt with this my whole life so I'm pretty good at keeping cool. I made sure to pack my tank tops and shorts and I always run with plenty of water. More for splashing on my face and arms than for drinking! When I finished my legs my teammates were there to cheer me in and brought me water to dump over my head and cold, wet towels to help me cool down. I just love the feeling of accomplishment that comes with completing a race like this. Plus they're just fun! You really get to know your teammates and you get to put yourself to the test. Next up is a Half Marathon in June!


Amanda

Pick a point in your life and write about your challenges or successes.

Young professionals in the credit union industry, attending as “Crashers,” will join thousands of credit union advocates for the 2019 Credit Union National Association Governmental Affairs Conference (CUNA GAC). Representing New Jersey this year will be Amanda Meeker, Operations Specialist at Jersey Shore FCU. Meeker is also a member of the New Jersey Credit Union League’s Emerging Leaders program. these next generation leaders will participate in conversations on the future and sustainability of the credit union industry while broadening their horizons on the impact of credit unions.
Crash the GAC is a non-stop, career-changing program for credit union young professionals that allows them to participate in the industry’s largest advocacy conference with complimentary registration, exclusive networking opportunities, leadership development tools, and mentoring sessions with industry leaders from organizations such as Filene Research Institute, CUNA, and National Credit Union Foundation (NCUF). 


Evelyn

Pick a point in your life and write about your challenges or successes.

Although Evelyn Klaire is only one, she has taught me more about life in a year than I had known my entire 28 years of life. This miracle girl has been through more at age one than most people do in an entire lifetime yet she still is always smiling.  I know without a doubt our little girl will move mountains in her lifetime and I'm beyond thankful to get to witness it all firsthand.

How has FIRST impacted your life?

I could NOT have made it through this first year without FIRST. These incredible people who I've never met have been there in the darkest and brightest days to help any way they can.


A Mom's Story

Pick a point in your life and write about your challenges or successes.

When my daughter was born early at 33 1/2 weeks with a collodion membrane none of the doctors or nurses even knew what was going on with my baby. They had her flown in a helicopter to a children`s hospital a couple hours away and we had to wait for a phone call to get answers. I remember when they told us over the phone, that she had ichthyosis, I asked ich what? We had never heard of that word before. We were able to drive to where she was the next day, we stayed there for 5 nights. It was very scary in the beginning, and I didn`t feel like anyone at the hospital was giving me enough information. I felt isolated and alone, but as the membrane shed and I learned how to care for our daughter`s skin, things begin to get a little easier. Now with her at the age of 12, her skin care is much easier to handle, though she does much of it on her own. I have learned to not hold her back from doing anything because of her ichthyosis. She is a fierce and spunky girl who loves life and animals. She loves being outdoors and is learning to take precautions during warm and hot weather, so that she doesn`t overheat too badly. We as a family have learned how to do things differently, but we don`t let it keep us from enjoying life. I would say, ichthyosis is a big part of our life, but we do not let it define us!

How has FIRST impacted your life?

FIRST has been great in providing accurate information on how to care for our daughter`s skin and health in general. I don`t know what I would do with out the online support pages. It`s a real blessing to be able to speak to others who understand and have a wealth of first hand experience with ichthyosis.


Christina

Pick a point in your life and write about your challenges or successes.

I am Christina Raj from India and I am 45 years old. I have severe type of ARCI-lamellar ichthyosis and I suffer from debilitating pain. I wanted to share my story with you so that my country could also know about this skin condition. I had to resign from my job of 20 years because of a bad manager. I am facing terrible treatment in the apartment I live in and had to change many flats before coming here. I want to change the way people treat  people who have a disability or challenge.


Rochelle

When I published my blog post for Ichthyosis Awareness Month I was simply setting out to accomplish a long overdue goal while sharing a story I was proud to tell. I never imagined the impact or the reach it would have and the opportunities it would bring. So here I am today, sharing the first of many posts as guest contributor to the FIRST blog, elaborating on a question I was asked following the success of my essay: “Why Now?”

Though many people discovered me for the first time through my IAM story, I've been sharing a lot about myself since 2012 on my craft blog Lucky Lucille. The internet knows me as a designer, a seamstress, and a knitter, and though I have mentioned my skin casually a few times on my blog I've never talked about Ichthyosis in full. As I gained more and more blog readers and social media followers the more it felt slightly dishonest not to talk about my skin in depth. It's such a massive part of my life and it influences so much of what I do and create, and yet so many people who know me know so little about ichthyosis. (continue reading Rochelle's story here)


Ramon

Pick a point in your life and write about your challenges or successes.

Ramon Pulido's personality is a very outgoing young man, friendly, creative and a great sense of humor. We take one day at a time with our daily life. His biggest challenge is getting his skin to stay hydrated and we need to help him to exfoliate. Another challenge is not being able to do many summer activities and we need to limit his sun exposure. A good success is when he travels to California and gets ocean water on him because it helps to soften his skin. The sand on his feet and salt water cleanses off the rough spots. He loves to splash like a little guppy! We love Beiersdorf's program with the supply of their Healing Ointment. We are so grateful for their help.


Jack

Pick a point in your life and write about your challenges or successes.

My great-grandfather became a dermatologist because of his own skin. He passed down this gene to my grandma, who passed it along to my dad. No one had a name for it, and no one really knew what it was. Fast forward 20 years, I was pregnant with my first child. Just for giggles I took the state recommended blood test for fetal abnormalities. A little while later, I got a call from our geneticist saying there was something potentially very wrong with our child and we had low levels of unconjugated estriol. She told me "it could be his skin". Immediately I said "skin?" and told her about my mom`s plaque psoriasis and my own skin issues. It was then when she brought up my dad. Unbelievably to us, we basically got diagnosed with x-linked ichythyosis. After looking at the amnio results we confirmed the diagnosis.  I think our biggest success was finally putting a name to my dad`s skin disease and knowing ahead of time for my son. Right away we were prescribed aquaphor the day he was born and when he was just 5 days old he met his first dermatologist! If it weren`t for that blood test we would have never known how to get the care he needed, and we would have never have had a name to my dad`s condition.

How has FIRST impacted your life?

FIRST was introduced to us at 5 days old. We didn`t know where to start. We went to the 2016 conference and learned a ton about ichthyosis and met other parents. It was good seeing other people that wouldn`t judge us or him. Love FIRST!


Geordyn

Pick a point in your life and write about your challenges or successes.

This is one happy girl! Geordyn won 4 out of 5 medals, and placed 5th overall! This girl has been a strong one from day one! Her health condition may keep her from many practices, but that’s not going to slow her down! “You can’t” should never be in your dictionary, if you want it you can do it! It may be harder, it may be longer, but nothing comes easy! Our weaknesses will not define us! Geordyn, age 8, with CIE and loves gymnastics!  #thrivingwithichthyosis


Eileen

Pick a point in your life and write about your challenges or successes.

Why blend in when you were born to stand out? The only way one can truly make a difference in the world is to be different from the world. These sayings truly make me a stronger person and a reminder that nothing will let me down. During my childhood, I always thought I was the same as everyone else. As years went by, I started to notice my outer appearance wasn't the same as my classmates or my friends. Younger kids or even adults would say to me, "What happened to your face?" I would try to explain to them what it was and they didn't understand it and this made me feel so uncomfortable and deeply hurt inside. I felt like an outcast and I didn't like who I was. I just wanted it to go away. I always asked God, "Why did this have to happen to me?" Even now, there are times my face would be so dry at school that I would try to avoid eye contact when someone is talking to me. I would always have pieces of my skin on my clothes, on a seat I was sitting in, or even on the desk. I felt disgusted with myself knowing my skin would always fall out like that. However, my family had always supported me and told me that one day God will heal me if I have faith in him. When I went to a catholic retreat back in middle school, there was a session where a priest or anyone from the retreat team would put holy water on each individual's forehead and there were many people who fell down because they were touched by the Holy Spirit. Before the guy made a cross on my forehead with the holy water, he told me that he knew what I was going through and he knew about my skin disease (at that time my skin wasn't that dry or noticeable). I was in shock and tears were running down my face. I fell down and I felt like a whole new person when I woke up. I was indeed touched by the Holy Spirit. Even though I wasn't healed, that was when I started to realize that I am so lucky to have a family, house, food, no life threatening disease, and the ability to walk, talk, hear, see, and much more! This rare disease I have is nothing compared to what a lot of people are facing with right now. I am so blessed to have only a mild form of ichthyosis. There are days my skin would look so clear that it doesn't even look like I have ichthyosis and days it's so dry. Every time my skin looks clear, I would look at the mirror and touch my face and admire the fact on how soft and beautiful my face looks. It would be my number one dream to have my skin stay like that forever! For all those affected with Ichthyosis, our skin disease is truly a blessing in disguise. Even if you are not religious, it will still teach you to be grateful for everything you have and allow you to work on the best version of yourself. As a high school student, I have been working on stepping out of my comfort zone. I have taken on leadership roles by starting an Indian Dance Club and a HOSA club (a club for high school students to compete in various medical events). I am a LEAD mentor and a member of Student Council, Spanish Club, and Key Club. Activities such as volunteering in the community and dancing has helped me through all my tough times. As a career, I have a strong desire to become a Physician Assistant in Dermatology. I want to work with patients with any skin-related problems. Also, I was even a call moderator for one of the FIRST conference calls. Even though I was the youngest one there, it was an amazing experience to be an inspiration for the adults. Currently, I am planning an Indian Dance Clinic for students K-5 in my town where all the proceeds will go to FIRST. I want to do everything I can to raise awareness towards ichthyosis and help all the members in FIRST. In the end, the ability to stay positive, especially when having a rare skin disease, is not easy. There will still be ups and downs. It is only through a support network like FIRST that we can help and understand each other as we continue our journey in life! 


Katherine

Pick a point in your life and write about your challenges or successes.

When diving into the skincare/makeup artistry world I debated whether or not people would even hire me to represent their companies because of the history I had during my childhood of being made fun of for my skin looking the way it does. It lingers with you...your whole life. It doesnt ruin your life...but it never leaves the back of your thoughts. Always doubting your exterior out of the thought of being judged.  I have been an artist my entire life and my skills show it. I did an interview where I had to show off my skills to a company to prove myself of being worthy for hire. While awaiting word of whether or not I had gotten the job, the thought raced through my brain, I had never done makeup professionally and I didnt know what even half of the tools were for!!! I knew what I would use them for if I was going to go paint a typical canvas, but not a living breathing face. My skills were strong enough that not only was I hired by the company, but now I have a following, and many of which I have grown while working with the public for years now.  Being in the makeup industry you always hear and see of other artists that do their makeup perfectly and how beautiful they are. But you know what makes me different and unlike the rest, Im honest. I wear my struggle externally. People can literally see that I'm not perfect. They see the makeup I do and they still want me.  A HUGE way that I connect and have return customers is because of this reason. They know my skill. I talk to them about dermatology struggles. I explain im not a skin pro but I have literally been in and out of the derm office my entire life and not only having ichthyosis, my skin is crazy sensitive. I break out, I wrinkle, I've gotten tattoos, piercings, I'm dry and oily...and then we all scream HOORAY for all the qualities our skin have been graced with. Whatever you want to be, you can, no matter what your exterior may look like.

How has FIRST impacted your life?

I haven't been active very long. I'm hoping to be more active. I've enjoyed getting a few of the brochures. I received some of the cards in the mail and I love giving those out to clients who are just curious about my skin type. Some random people tell me that they know someone with what I have and I give them a card. I've just started following y'all from my two Instagram accounts and I'm so happy I found this link. I hope I can help. I'm 32 and I educate daily.


Primrose

Pick a point in your life and write about your challenges or successes.

On the 9th of Sept 2014, I received pictures of my nephnew who lives in Kenya. I remember looking at the pictures and feeling absolutely overwhelmed and helpless. I had never seen a skin condition like this. I was devastated. I had never seen him in person since I live in Europe and his condition was undiagnosed for almost four years.  I knew I had to do something but was not sure what. I went online and started researching on skin conditions. I happen to have a deep interest in medicine and love watching medical documentaries. What a surprise it was when I picked to watch the story of Francesca Tenconi! There was hope for my nephew. I felt hopeful and optmistic I would get help which we desparately needed. I emailed the Childrens Skin Foundation and got an email reply within minutes. They told me from  what they can see he might be suffering from ichthyosis. I had never heard of this name before. They told me to get in touch with FIRST who might be able to help me. A few minutes later I received an email with your link. I stayed up almost the whole night educating myself on this condition. I felt a sigh of relief realizing there is help out there and other people who suffer from the same condition. It was a challenge knowing this is a genetic condition which would not disappear thru medication.

How has FIRST impacted your life?

Positively! Thru the information I received, I felt empowered, knowing I could share skin caring tips with my nephew's mum and encourage her and has had a very positive impact on his healing. The donations we received were utilized to seek medical attention from a professional, we see positive changes! Thank you so much for your support.


Sonya

Pick a point in your life and write about your challenges or successes.

The biggest challenge for me growing up was that I thought I was alone in my skin condition. I was mostly friendless and alienated. As I got to  middle school age I was depressed and suicidal. There was no support out there for me and I often wondered why there was no research on icthyosis. I knew nothing about FIRST until I was 40 years old (3 years ago)  I attended my first conference in 2018.

How has FIRST impacted your life?

When I received my first FIRST magazine I learned so much about myself and it confirmed that the things that I went through were real because others go through it. I was overwhelmed with joy and for the first time felt that I had a support system and truly was not alone after all.  I am so very grateful that this foundation is running. It's not in vein. The conference was so wonderful on so many levels. It makes me want to help the young people who may need someone to talk to and someone to encourage them. I want to help in any way. I'm grateful for the friendships I've made through FIRST.


Lynn

Pick a point in your life and write about your challenges or successes.

When I was about 12 (I`m now 59), I knew there was something very different about my skin. We moved to Oregon from Southern California and I started having significant issues because of the wetter and colder climate. I couldn`t put on enough commercial lotion and creams. They absorbed almost immediately into the barren desert of my skin - especially my hands and feet. I didn`t find the right Rx (and now OTC) lotion in Lac Hydrin/Am-Lactin until I was in my early 30s when my pre-med boyfriend encouraged me to see a dermatologist. I`m so glad I did! I still have a lot of trouble - especially during very rainy Oregon winters - including having the additional thickening of the skin and wrinkles on my hands and feet. But it`s as good as I can get it. :)

How has FIRST impacted your life?

It has helped me realize I`m not alone and that in many ways I`m fortunate my ichthyosis is considered fairly mild.


Sophia

Pick a point in your life and write about your challenges or successes.

Sophia has overcome lots of struggles in her life already! But her biggest is learning that even tho she may look different than other children, she is the same! If you ask anyone they all say she has the sweetest heart! She suffers with pain daily but others would never know! She is a fighter!

How has FIRST impacted your life?

FIRST has helped along the way with all our hospital stays! From the online doctors to the information online.


Lucy

Watering the seed of awareness

Little did I realise when I first connected with Courtney Westlake over six years ago, the effect her words and actions would have on me.  We connected through her Facebook page in 2012, ‘Blessed by Brenna’.  My daughter, Lucy, had just been delivered six weeks early due to complications and one of my cousins in the USA had rung me excitedly telling me she found someone who would know what to do and how to do it!!! You see, Lucy was born with Harlequin Ichthyosis, several months after Brenna was born. We did not know Lucy was going to arrive via emergency C-Section nor that she would have HI.  Instantly, Brenna became our hope, our beacon of light. We would read and re-read every sentence in Courtney’s blog. Her words were so familiar; it was as if she was writing our own experience!! Her blog became our hope, our inspiration and our strength. We reached out and continue to reach out for her guidance and advice.

Courtney blogged about her efforts of trying to raise awareness of ichthyosis. Up until Lucy’s birth, Ichthyosis was a word we had never even heard of. We did not know what Ichthyosis would mean for our family, all it entailed nor all it would give back to our family.  It is safe to say that a little seed was sown in my mind to try to do anything I could to raise the profile and awareness of Ichthyosis.  While I recognise that educating others can be exhausting and involves extra work (when there is so little spare family time), it has repaid in dividends for our family in terms of understanding Ichthyosis, its acceptance and subsequent support.

As part of May IAM, I thought I would share some of the small steps taken that have provided such positive outcomes in our community in the hope that it might offer inspiration and motivation in families ‘new’ to the journey of Ichthyosis

  1. When Lucy was born, our family connected with the local high school (I am a teacher there) and the students under the guidance of Mrs. Brennan undertook a project.  They published a book of stories ‘Heroes in the Classroom’, where the children recounted their favourite school memories.  They sold the book locally and the proceeds helped us stay at Lucy’s bedside for 8 months in a hospital, five hours drive from our home.  Our National TV broadcaster, RTE, heard of their efforts and Lucy’s battle for life and decided to run a programme which showcased Lucy’s early life and really raised awareness of Ichthyosis.  It was excellent in terms of being factual and was in no way dramatic.  The demand for the book ‘Heroes in the Classroom’ went national after this programme, and the letters and calls of support our family received were truly overwhelming. We have kept every single card and letter and intend to show her these when a bad day hits……
  2. Following on from this, a request came from the National Radio broadcaster asking would we would give an interview to further raise awareness of Ichthyosis to the general public.  We were delighted to be given such a platform and seized the opportunity, albeit nervously.
  3. When Lucy finally got home, I decided I would write a ‘happy’ letter with ‘happy’ pictures of Lucy in child friendly language and I sent it to all the local Primary (Elementary) schools.  My aim was to introduce the local children to our family, to guess their potential questions and provide answers in that letter which they might have if they ever met us. I encouraged them to come over to us if they met us and say a big hi to ‘baby’ Lucy and perhaps compliment how lovely her outfit would be etc!!! I simply cannot say how beneficial this has been in terms of leaving the house.  Every child views Lucy as a mini-celebrity, feel they all know her and genuinely love her to bits!!! If anyone would like a copy of the letter, just message me privately and I am happy to help.
  4. We constantly strive to allow Lucy to partake in all extra-curricular classes and camps if she is well enough to attend. Even turning up once to a class forms friendships and understanding.  Children are literal in their thinking and questioning. I have learnt that we just need to actually answer their questions and then it’s almost as if it is ticked off and play can resume. Lately we have been intentionally (but subtly) handing over the reins of answering to Lucy so as she has control of her situations.
  5. Lucy has always been taught by us to never be shy or afraid of who she is. We remind her constantly in subtle ways of how fabulous she is, how she is different, the benefits of having her ‘special’ skin (extra bonding time during bath time, fast healing of cuts….) and how to cope with different scenarios.  The latter is vital for any child with any difficulty. It gives them a sense of ownership of their body, gives them their own platform to explain things in words that are comfortable for them to share with others and increases their confidence.  Her go-to sentence in a difficult situation is ‘Hi, I am Lucy and I see you have noticed my special skin….I use special shiny cream so as it doesn’t be sore and I can play loads….would you like to play….I love playing…...’ Lucy is now at an age where she thinks that some children could get ‘afraid’ when they see her. We explain how all children are different, and give examples (wear glasses, use a chair etc). We also explain how all children react differently to new things, perhaps it is falling down and hurting themselves for the first time, trying a new food (we are struggling with that still ??) but that all she can do is to explain her difference and it is their problem if they aren’t mature enough to realise how the world works.  She is also now aware that it is ‘unfair’ when she doesn’t get to have fun if her skin is sore, that it makes her sad when she is too weak or sick to attend school etc.  We agree with her….how it is unfair,  how we understand why she is sad or disappointed but how we will try our best together as ‘Team Gallagher’ to get her fit and healthy as quick as possible again.   
  6. When she started school, I wrote a letter to her school community letting them know how great a character she is and how she might need a little help now and again in terms of reminding to drink her water etc. I can safely say they are amazing and we are all so lucky to have Scoil Roisín in our lives.
  7. Third level Nursing Universities have requested me to speak to their students on community nursing needs, home care nursing and Ichthyosis in general. It has been a very worthwhile experience. 

I can only hope that my thoughts might hit a chord with one caregiver, might offer hope and inspiration. Even when the dark days descend, the Ichthyosis community stand together as one.  Working together with our wider communities in order to try educating others to our life experiences with Ichthyosis, helps create an ethos of ‘together we stand’ in support of each other and truly makes all our lives a little easier.

This was certainly true and very visible when the Westlake family visited us during their Irish trip in April of this year. To say that both our family and our entire community were excited about their arrival is the understatement of the year.  It was so touching for us to realise how the seed which Courtney planted in my mind all those years ago, grew, blossomed and showed itself in all its glory during their trip to Donegal.  Our family had no act in anything that I describe below, and I think that is what makes it all the more special…….

The community decided they wanted the Westlake family to know how much they are thought off and loved. Our priest welcomed them during mass and invited the children to the altar.  Lucy’s school (Scoil Roisín) opened its doors during the Easter holidays and the parents baked treats and the children of the school performed the music from their school band.  The local hotel, The Waterfront Hotel Dungloe, contacted us and asked us in for dinner as their treat and allowed the children to make their own desserts. The hotel presented the Westlake family with a personalised engraved Donegal Pen. The local ferry company provided free travel to the local Aranmore Island and even packed us a picnic hamper. The lighthouse owner got in contact and provided keys to access the lighthouse and the lightkeeper’s house. This list is merely an example of how we all reap the benefits of raising awareness; sometimes it is not evident immediately and sometimes it is. Either way it is worthwhile……

Happy Ichthyosis Awareness Month everyone. Thank you for being there for our family and hopefully we can return your kindness…….


J. D.

Pick a point in your life and write about your challenges or successes.

Hi My name is J.D. I'm 13 years old and I live in East Texas. My biggest challenge, Is helping people understand that I am not sick and what I have can not be passed on to other people. For the longest time my mom would explain that it was nothing she did wrong. She would get asked things like, maybe you should bathe him more, Why do you allow his skin to get this way? Try putting on more lotion. It took my mom and I 10 years of my life to find out what I have. And finally we both got the answers that we needed. Finally, we were able to put a name with the face. All those people that said my mom was not taking care of me. Can now know the truth. My mom can finally show proof that it was nothing she didn't do. My mom has always gone above and beyond to take care of me. My successes are: I am in band and I love percussion. I play the snare drum. Next year we will start marching for our school. My biggest dream is to finish high school with a band scholarship. I am so excited because we will be doing UIL Competitions, state competitions and more. I even have a solo part coming up.  I never let ichthyosis get in my way. Ichthyosis may be a part of my life. But it does not control who I am.

How has FIRST impacted your life?

We found FIRST just after I was diagnosed with ichthyosis. She wanted answers and she found them with FIRST. They sent her these cards that explains why my skin is this way. Thank you FIRST.


Stefan

Pick a point in your life and write about your challenges or successes.

For 29 years,  l've lived with my skin disease called harlequin ichthyosis and I am one of the oldest to be born with it in Germany. In my everyday life, the disease has never caused me any problems worth mentioning. Of course people look at you, but I have learned to deal with it. I don't see ichthyosis as a disease, rather as a challenge and motivation. At the age of 19, I published my first book and four plays followed after that! I am also active as an actor at the theatre and last year I opened my business for commercial services.

How has FIRST impacted your life?

FIRST is an interesting platform with current articles about ichthyosis. Although very few people are affected by this disease, I am all the more pleased that this community exists.


Atique

Pick a point in your life and write about your challenges or successes.

My name is Atique and I am doing M.Phil in Chemistry from University of Kotli. I am from Kotli Azad Kashmir Pakistan. I was also born with a form of ichthyosis called ARCI-lamellar.

How has FIRST impacted your life?

I believe my time with FIRST is very precious and worthy because it strengthens me to step forward in my life with ichthyosis. It is also a forum where I meet with other people affected with ichthyosis and I learned so much from them. I am a proud UFIRST Scholar and I am so grateful since it was instrumental in my education.


Devan

Pick a point in your life and write about your challenges or successes.

Hello my name is Devan. I am 33 years old and I live in the island of Trinidad and Tobago. I was diagnosed with ichthyosis at birth but my doctors were unable to assist my parents with treatment. Seeking medical assistance, my parents traveled to Caracas due to the advancement in medical technology where they were given instructions on looking after my needs. Growing up in Trinidad, I was not accepted into regular school until the age of 9 where I was recommended to attend a school for disabled children. At my school, I felt welcomed. I never had to face the outside world where people would look at me differently. I loved looking at the other kids playing outside and eventually my teachers enrolled me in a volleyball team at school where I’d play indoor sports. Later on,  I started playing football outside little by little, because my school took part in the Special Olympics. I learned that I could keep my skin cool by wetting my t-shirt and I’d be able to play longer on the field. I always remembered the advice my teachers gave me, he said “one day you’ll be out there representing the country”. He saw something in me that I didn’t see in myself. I figured since I loved being out on the field doing the things people thought I couldn’t do because of my skin condition, why not push harder to make the Special Olympics team. It has been almost 19 years since I’ve been apart of the Special Olympics. In 2016, I was an assistant coach for Special Olympics floor hockey team and traveled to Austria in 2017 to take part in the Special Olympics World Winter Games. I was nominated for the First Citizen Sports Foundation award in the year 2016 where they wrote their first article about me. 


Brittany

Pick a point in your life and write about your challenges or successes.

I have many raw pictures of myself. Some are good days and others where I'm in shorts are great days. I have more bad than good but I try not to let my skin take over my lifestyle because I can't control it. I never know if it's going to be a good or bad day until the moment I wake up. Luckily, I have an incredible family and the the greatest friends anyone could have, who don't treat me any different. They always include me and push me out of my limits. There was always confusion over which type I have. I've never had the courage to tell my story or show off my skin on bad days. I NEVER leave my house without a bath or makeup, lol! 

 


Deb

Back to our Roots: A Career Dedicated to the Power of Play

Deborah Vilas to Receive 2019 Distinguished Service Award

Allison Sohanlol, MSc, CCLS
MCMASTER UNIVERSITY, HAMILTON, ON, CANADA

The Distinguished Service Award honours those who have demonstrated strong leadership and outstanding contributions to the field of child life. This years’ recipient, Deborah (Deb) Vilas, MS, CCLS, LMSW, represents these attributes with a common thread throughout her life: the act of service.

The word “service” comes immediately to mind when describing Deb’s passion for her diverse and varied career. Starting at an early age, the concept of service was modeled by Deb’s parents, especially her father (a minister), and was a core part of her upbringing. Deb’s life experiences have also had a heavy influence on the feeling that child life was not a career choice, but that she was called to this profession. She endured many hospitalizations throughout her childhood that provided her with a certain comfort level for being in the hospital environment, and also an awareness of the services and supports that she and her parents did not receive. These early life influences are the cornerstone of Deb’s focus to serve others. With one glance at Deb’s professional website, you begin to peel back the layers of her core beliefs, values, and passion for all things play.

Deb’s jump into the world of child life developed through a series of forks in the road, with each decision creating a unique path. Deb describes her career in child life as always developing, changing, and expanding: a career filled with joy and passion for connecting with others, demonstrating the power and benefits of play for everyone, and advocating for the child life profession as a non-negotiable, vital part of any psychosocial team. Deb “found” child life after a period of soul searching, as she left a career that sparked little joy for her and deliberated about what career path she next wanted to pursue. A volunteer role led to a position as volunteer administrator at Memorial Sloan-Kettering Cancer Center, where she met a child life specialist. Deb describes her introduction to the role of a child life specialist as a light bulb going off that inspired her almost immediately to enroll at the Bank Street College of Education to obtain a degree in early childhood special education with a concentration in child life.

A New Yorker through and through, Deb has amassed a diverse career in child life over the past 25 years that has included hospital-based services, community agencies, private consulting, and a faculty position at the Bank Street College of Education consisting of teaching, advising, and field supervision. She has made several contributions to ACLP committees as a member of the Research and Scholarship Committee, taskforces for research and technology, and the Mentor Program.

Deb’s footprint in the field of child life will undoubtedly involve her many scholarly contributions to the profession. She is the author of countless publications through articles, book chapters, blogs, and educational videos. She was instrumental in the development and production of the widely used “That’s Child Life” video to showcase the impact of child life services and the ways that play can transform the hospital experience. In 2013 she received the Disney Scholarship for Innovations in Play, which led to the development of the Report on Findings of Play Practices and Innovations Survey: The State of Play in North American Hospitals (2014). This report provides data that helps healthcare professionals advocate for family-centered services and sparks a conversation for child life students and professionals alike to consider what areas need continued focus to ensure play is fully accessible and available to children and their families in hospital. The report on play practices also led to the creation of the Vilas Playroom Assessment Rubric (VIPAR) tool, of which Deb is particularly proud. These projects have led to Deb’s expertise being utilized by organizations such as Disney through their Team of Heroes project. Deb says she is energized when “work feels like play,” and has been able to serve on a panel of medical experts to identify how hospitals can create a more personalized and comforting experience for patients and families.

Last year, Deb received the Fred Thomases Faculty Excellence Award through Bank Street College. She has helped nurture the careers of countless child life specialists, both through her faculty position at Bank Street and through her outreach globally. Her nomination package includes support from a number of past students who describe her as “the ultimate child life mentor,” “the one person who will give you the right words at the right time,” and who feel strongly that “her lessons and voice are the backbone for so many specialists’ practice.” With respect to her global support of child life, she is described by one of her contacts abroad as a “child life influencer” who is humble, respectful of other cultures, and able to approach challenging situations through creative thinking and a hands-on approach to assist people who want to bring child life practices to their organization but have few resources available to support them.

Deb has spread the philosophy of child life far and wide through multiple avenues and isn’t slowing down anytime soon! In the last three years alone, she has presented 15 times across seven countries, including being invited to speak at the United Nations Headquarters in New York City. Her expertise in child development and play is renowned in the United States where she is frequently invited to present at conferences focused on child life, healthcare, and teaching. Her global reach has allowed her to share her knowledge through conferences and hands-on, play-focused workshops in the Czech Republic, Japan, Mexico, New Zealand, and the Palestinian Territories. The opportunity to travel has come about in only the last five years for Deb (a self-described homebody), showing once again her openness to trying new things, saying yes to experiences outside of her comfort zone, and welcoming personal and professional growth.

Meeting Deb for the first time, she immediately makes one feel at ease, like an old friend. She is honest and forthright in speaking to the challenges and successes along her career path and what she has learned from each one. When asked where she would like to see the child life profession in 10 years, her answer is quick and direct: “Out in the community.” Asked to expand on her vision, she is strong and steadfast in speaking to a child life specialists’ ability to foster resilience in children and youth both in hospital and when they return to their communities and schools. Deb is inspired by the many child life specialists who continue to forge their own paths in private practice, working in the community to meet a seemingly never-ending need for psychosocial care and support. At present, Deb’s career involves consulting with schools and daycare centres seeking to meet the needs of chronically ill children, providing remote supervision to child life specialists in private practice, public speaking engagements, and her faculty position at Bank Street. When asked how she balances it all, she credits “loving what I do, the constant support of my life partner, and yoga and meditation to keep me grounded.” Deb is an inspiring example of how to use your own voice to reach out into the world, support what you believe in, and fight for the needs of children, youth, and families by connecting with others and saying yes to the paths that are presented to you. Please join us at the opening session of the 2019 Annual Child Life Conference in Chicago, IL, to celebrate Deb’s Distinguished Service Award achievement.

REFERENCE
Vilas, D. (2014). Report on findings of play practices and innovations survey: The state of play in North American hospitals. Rockville, MD: Child Life Council.


Jonalyn

Pick a point in your life and write about your challenges or successes.

Motherhood has brought me to different journeys and I had my first child at the age of 19. I was very young and was afraid to raise a child. My life changed when my eldest came. 10 years later on the 4th of September, I gave birth to another and called her Thala (big bright star). She looked perfect except her skin which we noticed was too white as if she was soaked in a water for a long time. Days passed by until I noticed some part of her body seemed and her palms and soles were covered with a dry yellow flakes of cracked skin. Two months later, she developed blisters and when we brought her to the dermatologist, she told me Thala had ichthyosis vulgaris. She said I'm lucky cause it's the most common and mild type out of 27. As months passed by, her skin got worse until I brought her to another dermatologist and found out that she had bullous ichtyosiform erythroderma. At first I wanted to cry asking myself why out of millions of babies around the world, why my daughter? I did everything I could to make her healthy. It hurts me a lot whenever people approach and ask me about my daughter's skin. They thought she got burned. There were days when a tear would drop from my eye whenever I thought about the future. What if she gets bullied? What if her friends mock and try to walk away from her? Will I ever see her wear something confidently and proud? Can she handle the situation? Can she accept herself? In the Phillipines, ichthyosis is something most of us never heard of. Going to the derm is not an easy thing here and the products they recommend are expensive. 

How has FIRST impacted your life?

One day I found FIRST and later the Facebook groups associated with it. I got to meet some people who deal with the same medical issues. They sent my daughter help emotionally and financially. I learned a lot from their never ending support and advice. Today I learned to understand that this condition is no one's fault and that my child is not just one of the unfortunate randomly chosen kids. I fully accepted my fate as a mom and will do everything to raise both of my children happily and peacefully together with the help of my loving family.

FIRST is the only Foundation who helped my daughter right away. It made a very big impact in my life. It also lead me to connect to people who eventually extended their helping hands towards my daughter.  For me, every person working at FIRST are God given people. My family deeply thanks this foundation.


Diana

At the age of 7 months I was taken to Great Ormond Street Hospital in London where I was diagnosed with Ichthyosis. The type I had was congenital ichthyosiform erythroderma, that was in 1975. In 2002, in Seattle, I was rediagnosed with Netherton syndrome, they are both similar.   At Great Ormond Street Hospital I was the third baby they had seen with red scaly skin. Back then, out there if they had seen 3 people with the same condition more research was going to take place. So I was the third one. Yay me! Doctors in Atlanta told my mom it's good I was taken to that hospital. More research was done after that and it continues. I started Primary School in 1980, it was a hard time. The first time in a school environment, used to get teased on most days, going home not happy. I attended High School from 1987 to 1992. It was a difficult time, just seemed like you had to be accepted and I wasn't.  Getting teased all the time from classmates. I continued to do my best regarding grades. I was 14 years old when I became interested in boys. Most of the time I kept it quiet because I soon learned that when I told someone, news traveled. After 1 hour or less after I spoke the whole school seemed to find out.  It created more teasing to me and the others. Then something happened.... I started to 'check out' James. I started college in 1992, graduating with a General Secretarial course in 1994. Things were finally starting to look up.  In 1995, I began working at a major bank in Bermuda. In 1996, James finally proposed and we got married in July 1997.  We now have 2 children, D’Jae, aged 16, and David, aged 9. In 2014, it was discovered that I had thyroid issues, anemia and a Vitamin D deficiency.  In 2015 I noticed a spot on my right breast. It was bigger than a dime in shape. The doctors were putting creams on it, photographing and measuring the wound. Upon further pokes, pictures and skin biopsies from Yale Dermatology it was confirmed that I had squamous cell carcinoma, a form of skin cancer. In August 2016 I had the piece surgically removed from my breast. Now I have a scar, my first one ever. Currently, I teach Sunday school as well as being involved in other ministries at our church.  I am an active parent rep for my son’s class and I continue to serve my community helping any way I can.  I have spoken at schools and our local health department and our story has been told in our local newspapers. Knowledge is power! At the FIRST conferences, I have taken part in all the studies to help someone else.  I have finally reached my dream of getting married, having children, a full time job etc.  You can achieve yours too!

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