Ichthyosis Awareness Month: Angela's story ~ "she's learning to be comfortable in uncomfortable skin."

Angela is a little girl who has both a visible birthmark and Ichthyosis. Her mum, Kimberly, writes of Angela's difficult experiences of being teased, and then the growth in her self care and confidence after receiving counselling and attending a dermatology camp. Kimberly's message is so important - emotional support is crucial to managing Ichthyosis - it's just as important as seeing our dermatologists. Kimberly blogs here.

 

"At first glance, Angela looks like any other ten year old. Yet if you look closely, there is a dusting of white on her skin. Then, as she brushes hair away from her face, the birthmark is uncovered. That’s when people stare or look away. If you ask about her skin, she simply says, “I forget my birthmark is even there. It doesn’t bother me. My skin condition is dry and uncomfortable.”

The diagnosis was almost accidental. During a routine appointment with a new Dermatologist, I ran my hand across the back of Angela’s neck. Flakes drifted down and I realized she was shedding! The doctor looked at her back, diagnosed Ichthyosis Vulgaris, and prescribed a new lotion. Thankful for a diagnosis I searched the internet for information. My computer screen filled with pictures that made my heart sink. We were already dealing with a Nevus (birthmark) I didn’t want to deal with anything else! Turning off the computer, I resolved not to search anymore.

Her skin improved, then the lotion battle began. After a few weeks without a skin care routine, I coaxed her into letting me apply her special lotion. It burned her skin. She ran around in circles screaming and crying. I grabbed a towel and scrubbed trying to get the lotion off. I held her tight as we both cried. I realized I needed answers. Turning to the internet again, I found the FIRST website - and answers. Discovering her level of IV wasn’t very severe, relief and gratitude overwhelmed me.

At this point, Angela was increasingly uncomfortable at school and teased constantly. With her emotional health deteriorating, we withdrew her. Finally, I sat with the dermatologist and discussed the emotional implications of Angela’s skin. The doctor became my hero that day. She patiently listened and provided lists of outside agencies to help and possible counseling if needed. Angela thrived again through homeschooling and a time of healing began.

The year came when Angela was old enough to attend Camp Discovery. Worried we would miss the deadline, the doctor’s office drove the needed paperwork to our house - once again, our Dermatologist saved the day! Camp brought many lessons for all of us. It changed Angela’s outlook. Not only did she take her skin care routine seriously with a positive attitude, she stopped hiding.

Since camp, Angela has enjoyed cheerleading and even acting! I’ll never forget the day a special needs child would not stop asking Angela what was on her face. She called her “monkey face” and kept touching her. I walked over to intervene. Angela looked at me and boldly said, “It’s ok, she just doesn’t understand. And mom, I can handle it”

You know, I said her doctor became a hero to me. Truth is - the real hero is Angela. The little girl, who at age seven shut down at school because of the teasing, now is the little girl, who when being teased, doesn’t back down, but shows love.

As her mom, it’s my job to help her learn to be comfortable in uncomfortable skin. It’s not easy. It takes community, doctors, and research. But most of all it takes prayer, acceptance, love, and embracing what makes her a hero."

If you are suffering from depression or anxiety and need to talk to someone, contact

Lifeline - phone 13 11 14

Beyond Blue - phone 1300 22 4636

Kids Helpline - phone 1800 55 1800

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Joanna's story ~ a full life lived.

Joanna and I have been friends online for about three years now. Her story shows that having Ichthyosis doesn't stop us from having a full life. Joanna leads such an active life - works full time, goes to pubs, and travels a lot. I'd like to go for a drink with her sometime!

"My name is Joanna, I am 36 years old and I was born with a rare skin condition called Bullous Ichthyosis Erythroderma. This generally means I get blistering to my skin, mainly to my feet and legs but as I have got older I tend to suffer less with blistering. I was my parents first child and daughter, I have 2 younger brothers and the only member of my family to have the condition, I do have a 50/50 chance of passing it on should to any children I have. My parents wanted me to go to a mainstream school and treated me as they did my brothers. I missed a lot of school due to hospitalisation when my skin was bad and received a lot of bullying, mainly in high school but I have went onto leaving school to obtaining a GNVQ Level 2 in floristry and I started working for the government in the tax department from the age of 18. It is not the career I intended to follow as I always had dreams of being a nurse, teacher, air-steward, florist, artist but I do love my job and colleagues and managers at work have been very accepting of my condition especially when I have had to take a lot of sick leave and I cannot see myself at fastly approaching 40 doing something else career wise.

I have a very good close circle of friends and have over the last few years met several people with Ichthyosis and developed good friendships with these people and been lucky to meet some through a private group on Facebook. I know when I was a child there was nobody to really confide in and talk to other than family and close friends and I often felt alone but I realise this is not the case and it is great that here in the UK we have a support group called Ichthyosis Support Group and a their is a group which a good friend of mine set up called 'Friends of Ichthyosis' and that is growing every day with new members and more awareness being raised.

I was taking Neotigason tablets from the age of 7 until I was 22 which helped control my skin but I decided to come off the tablets when I wanted to start a family, I got married at the age of 22, unfortunately, the marriage ended after 18 months, I have had long term relationships since but I am currently single. I often wonder if I will ever settle down or have children, but all I can do is take each day as it comes, be grateful for my life, good family and friends.

I love to socialise and travel, my parents have lived in Spain for 12 years now and I try and visit them as often as I can as the sun and a warmer climate does help my skin, but I cannot stand to get too hot because this can make my skin blister and become sore. Friends often say I should live abroad but I am settled here in the UK and am happy to remain here for the foreseeable future."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Jeremy's story ~ "I took some joy in the awkwardness the other person felt for asking me about my skin."

Jeremy was the first person to see the Ichthyosis Awareness Month blog project and request to be involved! I was so happy when this happened - I love how one person sharing their story encourages others to do so too. He is 34, lives in New Jersey, USA, and has Netherton's Syndrome.

"When I was born until about 2 months old, the doctors told my mom not to get attached to me because I was labeled as "Failure to thrive". I remember stories my dad told me of waking up and lifting my head off the pillow and the whole side of my face still being on the pillow. I used to receive blood plasma transfusions when I was little to help me. As I got older, my skin became less severe but still fragile at times. I started playing ice hockey at age 13 and fell in love with it. I have been lucky that no one in school ever picked on me. The worst people to deal with were strangers because they were rude when trying to ask "what is wrong with your skin?"

I finally started telling people I had a rare skin condition and took some joy in the awkwardness the other person felt for asking me to begin with. I went through college and graduate school and I am now a licensed social worker.

The people I work with usually are fine with my skin and don't ask. Of course I still get the occasional sunburn comment but nothing too crazy. I want to continue helping people and would like to work with veterans in the future.

I still play hockey when I can and love playing guitar. I have been around the world and have had amazing experiences and do not let my skin hold me back from doing the things I want and love. I have a girlfriend now and she is wonderful and understanding of my skin condition and respects me for who I am and what I have to manage. I shave my head due to the bamboo hair but it seems to work so I keep doing it."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month - Carolyn's story ~ "How I look is how I look and it doesn't need an explanation."."

I can't remember how Carolyn and I found each other - I think she wrote to me via email or Twitter after finding my blog. She's in her 50s and lives in America. We have connected on social media and I love that she now doesn't worry about what people think of her skin and appearance. Carolyn contributed to this story with a fabulous quote about how she doesn't worry about offending anyone who asks her about her appearance. And she loves Darren Hayes. She's definitely won me over! Here's her story.

 

"I have ichthyosis or, to be more precise, I have Epidermolytic Ichthyosis, also known as EI. And I have a confession to make: It doesn’t bother me and I make no apologies. Approximately 1 in 100,000 people have this condition. Based on this smidgen of information I have been singled out in ways both good and bad as someone who is different with a capital D.

I’m not delusional enough to say I’m glad I have EI but I’m not horribly disappointed either. Not because it could be worse. Things can always be worse. At the end of the day, EI is my normal. In the same way being 5’3” with blue eyes and size 8 feet is my normal. EI is a chronic condition, much like diabetes, high blood pressure or seasonal allergies, nothing more nothing less.

There was a time when I did nothing but make apologies. It took an act of overt discrimination to get me to see how silly that was. It cost me a job but I gained so much more. Once I got through that horrible period I decided that I no longer needed to feel bad about how I look. I spent years walking around hoping no one would notice my skin. Once I gave that up and just accepted it for what it is, ‘came out’ if you will, the stress of trying to hide went away and my skin improved considerably. By improved I don’t mean I got that complexion the beauty magazines say we all covet. I mean I realized that how I look is how I look and how I look doesn’t need an explanation.

Once we understand that life is, indeed, unfair and accept the fact that EI requires an inordinate amount of attention and maintenance we can move on. There’s nothing wrong with asking to be cut a little slack for dealing with EI but we needn’t use EI as an excuse to avoid living. Traveling is hard but I love to travel. What to do? I envy the people whose skin doesn’t crack and bleed in the dry airplane air but I’m not going to stop traveling because mine does. It’s the price I pay for having EI.

The internet is a good and a bad thing. It’s good in that people with EI no longer need to wait for 21 years to meet someone else with the condition the way I did. It’s bad in that disability communities sometimes delve into the mentality that we’re more fragile than we are. Our skin is fragile. Our psyches needn’t be."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Nelly's Story ~ the documentary star.

Nelly recently took part in a TV documentary that aims to challenge the perceptions of beauty and visible difference. Here she writes about her experiences on the program.

"My name is Nusrit but people call me Nelly. I am 29, I live in Coventry in the UK and have Harlequin Ichthyosis. I work as sports duty manager at my old college.

I was on a documentary called Beauty and the Beast - The Ugly Face of Prejudice. The idea of this documentary is to show two different people - one who was addicted to the way they look, and the other person who has a disfigurement. I was paired up with Holly Kent (pictured with Nelly throughout) who is a dancer and model. The whole experience was amazing. It helped me to get more confidence and I wanted to show people what I had to do keep my self healthy and alive. The documentary also showed what people put in their bodies to make themselves beautiful. Me and Holly are friends and we talk to each other from time to time. I didn’t meet any of the others contestants from the show.

 

I got a great response from doing the show as it opened people's eyes to what it’s like to have a disfigurement and people got to know about my skin condition. A lot of people think that I have been burnt in a fire.

I also wanted to help other people who have Ichthyosis. I like helping other people who have the same condition or who have a child with it – I give them some information about Ichthyosis. I like that I have got know more people with the same condition though Facebook. I have met a few people with Ichthyosis in person. It was lovely to have met them – it was nice to talk about our experience and exchange ideas.

I also like raising money for different charities like Walk for Skin, Race for Life and the Coventry Fun Run. Through doing these charity walks and runs, I raised money for Hereward college and Baby Lifeline.

My dream is to stay healthy."

You can watch Nelly on Beauty and the Beast on YouTube (note I apologise I cannot embed the video - I've tried so hard!).

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Jessica's story ~ "My skin condition is "normal" to me and everyone in my life."

Jessica sent me an email in 2011 saying that she found my blog and that I was the first person with Ichthyosis (Netherton's Syndrome) the same age as her. We've stayed in touch and discuss the similarities we face due to our Ichthyosis. She loves horses and lives in Winnipeg, Canada. Here's her story.

(Jessica (right) with her friend Candace)

"I am 31 years old and have obviously had Netherton's Syndrome my whole life (a form of ichthyosis). My younger years were the toughest due to being in and out of the hospital for infections and other complications. As I grew up I learned to take care of my skin and this is no longer an issue. My biggest is struggle is the allergies that come with it, I am allergic to over 100 foods and this is what has the greatest impact on my life, limiting where I can travel and what I can do. Would you believe I've never eaten in a restaurant?

Due to my life long exposure to the medical field I am currently enrolled in nursing school and have one year until I graduate! I also volunteer with many animal rescue organizations.

 

I don't let my skin condition get me down and the negatives are few and far between minus the allergies, I think this is mainly due to all the support from friends and family. I was raised as though I was no different from anyone else (no special treatment) and think this has helped with my confidence. I've been in a long term relationship for 5 years and have many of the same friends I've had since childhood, so I think that my life is on par with most others. My skin condition is "normal" to me and everyone in my life so I rarely even think about it, it's all about frame of mind. So all tolled my experience has been trying at times but overall just makes me a stronger person."

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: DeDe and Evan's story ~ "Evan is my young warrior."

I met DeDe (and her cousin Kara) in New York last August, over cocktails and a vat of fondue. DeDe's two year old son Evan has Harlequin Ichthyosis - considered the most severe form. Evan is a little cutie! On that sultry New York night, while we all compared paraffin-soaked notes (not literally - how GREASY would that be?!), DeDe, Kara, Mum and I talked about much more than Ichthyosis.

(DeDe, Me, Kara, Mum in NYC, August 2012)

 

We became firm friends and I recently spoke to her over the phone. I can't wait to see her again, and to meet Evan of course! DeDe has a blog called Our Young Warrior Evan and does an amazing job of raising Evan and awareness about Ichthyosis.

"My life completely changed the day my son was born. As most lives change with the welcoming of a child into the world, mine was a change I had not expected. Doctors gave us a diagnosis 2 days before my son was born but I wouldn’t believe them. They said that Harlequin Ichthyosis (HI) would be the “worst case scenario”. Doctors have been wrong before so I would not accept what they had told me. It wasn’t until we got the confirmation in the operating room when my world really changed.

Having a few days before his birth did give us time to research. It was information that I was not ready nor willing to hear. Three years ago, the amount of information available about HI was limited, though the FIRST Foundation seemed to have the most accurate and up to date info about it. Reading things online just made things more stressful so I chose to dismiss it until my son was born. And on that day I do not even remember shedding a tear. Why would I? I would never believe that my child would not survive. It was hard to even fathom the fact that a severe skin disorder could take his life.

Having the nation’s leading expert on Ichthyosis there for Evan could have subliminally eased my worries. Having a diagnosis days before and being prepared in the OR for a Harlequin foetus probably saved his. But by staying positive, not giving up hope, and ignoring all of the negative statistics is what kept me strong. How could I sit there and sob? My son was the one in physical pain fighting for his life. I wouldn’t let myself cry, I wouldn’t let Evan know that I was terrified. How could Evan feel loved and safe if I wept over his isolette? He needed to know that I was strong and needed to feel my positive energy.

I ordered anyone who came to visit Evan, during his 58 day NICU stay, that they were not allowed to cry in front of him. I remember telling my best friend, “If you are going to cry do it now because I only want positive energy surrounding Evan.” I know that being in one of the best hospitals in the country, with Ichthyosis experts, and expert Neonatologists and nurses are what kept my son alive. But I can’t help to think how our positive energy gave Evan the will to live.

I am not going to lie, taking care of Evan is a challenging job. Three years later we still have the same skin routine, which is meticulous and exhausting. My husband and I have become obsessed with keeping Evan’s skin in the best condition possible. I guess it is a good thing to be obsessed about especially since I think the “best condition” equals comfort.

Evan’s skin is bright red. You can imagine some of the stranger encounters we have, specifically in the summer. Many people ask “Is he sun burnt?” “Does it hurt?” And my answer is always no & no. We work so hard on Evan’s skin so he stays comfortable. If he was in pain I think he’d let us know. It just shows how important skin maintenance is because I cannot think of a time where Evan was ever in pain from his skin. Obviously cuts or fissures may not feel good but he does not hold back when making a dive south for his boy parts even when there is a fissure down there.

Evan is my young warrior. He is a fighter. My life did change when he was born. I became a mother. I became a Harlequin “expert”. Though this is not what I had envisioned life would be like with my first child, it is a life I enjoy and treasure. Evan has opened my eyes even wider than they already were. I have always been accepting of others especially those with a visible difference or disability but having Evan in my life has really taught me what acceptance is. He has made me appreciate the little things in life and has moulded my character into a strong, resilient, nurturing and accepting individual and mother.

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Confetti Skin ~ finding unexpected support from the Reddit forums.

My friends Jennifer and Rachel See run a blog called Confetti Skin. They're extremely knowledgeable about Ichthyosis, and continually challenge misinformation that's spread about the condition. They recently took to Reddit to engage with the gawkers. The support they gained was incredible - and as we agreed, unexpected.

"Hello! We are Jennifer and Rachel See, the authors of the Confetti Skin, Beauty Within blog. We have been blogging about ichthyosis and its effect on our lives and more information about us and our affected children is available on our blog. (For those of you who are unfamiliar with us, our “blog year in review” post from January summarized the highlights of our blog, and might be a good supplemental introduction to our writing.) For our guest post, Carly asked us to talk about our blog and our widely seen “Ask Me Anything” post about ichthyosis on Reddit.

We have been extremely active within the the “ichthyosis community” -- both as volunteers in various capacities for FIRST, the Foundation for Ichthyosis and Related Skin Types, and in numerous online discussion groups. In addition to explaining the science behind ichthyosis research and sharing personal stories about life with ichthyosis, we have also written about ichthyosis in the mainstream media and how it’s perceived in the broader world.

Like it or not, the skin disorder that affects our children has, for many years, been notorious as an “Internet meme”. We believe that many young people only know about ichthyosis because they have seen viral “shock” pictures or videos of babies with harlequin ichthyosis, the most severe form of autosomal recessive congenital ichthyosis (ARCI).

A few months ago, Rachel tallied up the hits for the top 12 videos on Youtube showing babies with harlequin ichthyosis, and by her count they were viewed over 65 million times and had attracted over 80,000 comments. And in 2010, in another Youtube video viewed millions of times, a well-known Hollywood director’s “reimagining” of a video-game villain as affected with harlequin ichthyosis.

This past December, a Facebook marketing scammer impersonating a Brazilian soccer player stole a picture of a baby with harlequin ichthyosis, and put it up on their Facebook page with the caption “1 like = 1 get well soon”. The picture generated over 1.3 million “likes” on Facebook. We wrote about how “liking” the picture did nothing to help people with ichthyosis and how Rachel explained what was going on to our oldest child.

Just as that brouhaha was settling down, a picture of a person with lamellar ichthyosis attracted a lot of attention on Reddit, one of the most popular and influential sites on the Internet. (Last month, Reddit had over 63 million unique visitors who viewed over 4.4 billion pages; here’s someone’s infographic explanation of how Reddit works.)

In any event, like many other pictures of babies and other people with ichthyosis, the picture was posted to the “WTF” subforum of Reddit, which has over 3 million readers. Earlier in December, we had participated in similar discussions about ichthyosis on the WTF subreddit, and as we started reading the lamellar ichthyosis post, we were preparing for much of the same.

Our hope was that by engaging with the gawkers on Reddit, we would be able to help stop the spread of misinformation and ignorance. But this time, we saw that someone else had already beaten us to it. A young woman who went by the Reddit username “Candlesandfish” had posted that she had lamellar ichthyosis, that it didn’t look like the the untreated body part in the original post, and then even posted pictures of herself to prove it. She singlehandedly had derailed most of the gawking by the time we woke up and found it that morning.

After we “met” in the WTF thread, we got to know Kyriaki, the young woman behind “Candlesandfish” much better. (She even wrote a very Aussie-specificT guest post for our blog.) And together, we decided to try to reach an audience beyond Reddit’s “WTF” forum by opening ourselves up to questions in Reddit’s “Ask Me Anything” area.

The “AMA” area is one of Reddit’s most popular forums, with celebrities and non-celebrities alike stepping up to face whatever questions the Reddit community throws out. Redditors like honesty and don’t like to be sold a product. President Obama had a very successful session during his campaign, and the MythBusters have had three separate sessions to the delight of thousands. Movie stars coming on to promote a movie or proving themselves barely literate have gone really badly when the crowd wants to ask about other things.

 

We felt our own AMA from April 15 was wildly successful. The post itself generated over 1600 comments, of which at least 300 were questions. But the really amazing thing was how many people apparently saw what we had to say but didn’t post. Because of the “upvotes” on the post, we made the front page of Reddit, and the “proof” picture we posted of Rachel’s foot has been viewed over 270,000 times and our own family photo has been viewed over 71,000 times.

We feel that the most important thing we accomplished in the Reddit “AMA” was combating misinformation and putting a human face on a disorder that many people only knew as a “shock” picture. Helping people understand that harlequin ichthyosis isn’t always fatal and that there are many types of ichthyosis leads to better understanding all-around, we think.

Some of the questions we faced were fairly awkward to address. Many people wanted to know why we had children, and asserted that we were being selfish by choosing to have children who might be affected with ichthyosis. One person called us “monsters” to pass this on, while others were gentler. Doing a successful “Ask Me Anything” doesn’t mean that you need to discuss every detail of your life, but we felt that these were legitimate questions that do come up in serious discussions with affected individuals and parents. And we think that having that discussion, with appropriate context and perspective, is a good thing. (Just because a question is difficult or doesn’t have clear-cut answers doesn’t mean that it should be shunned.)

We also had over a dozen people came out of the woodwork to say, “Hey, my nephew has this, too! I’m going to show him this thread!” Our openness meant we made several new friends. Some said that they had never spoken with anyone else who was affected with ichthyosis, or that they would direct a teenage family member towards our writings as a positive role model. We think we demonstrated to hundreds of thousands of people on Reddit that having ichthyosis does not doom you to having no family, children, friends or career, which is not only a common fear among new parents, but also a common assumption made by people who only see a shocking picture of a baby affected with harlequin ichthyosis.

Most people were just curious, and asked a lot of insightful questions. Hearing what they were curious about -- genetic issues, lotion advice, retinoids, bullying -- provided lots of food for thought (and future blog posts and advocacy projects). It was really nice to see some posts where they saw the positive side of ichthyosis - fast-healing skin, for example.

We were overwhelmed by how positive the whole experience was. Ignorance and fear are best combated by education. We think we made a pretty good dent and look forward to the next big thing."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Nick's story ~ "the condition is a blessing in disguise."

Nick Jones is someone I can't wait to meet. He lives in London. I enjoy his cheekiness on Facebook, and I admire his positivity, perspective and humour about living with Ichthyosis. He is bold and honest - he reminds me of myself with his "this is how it is" attitude. Nick's poetry is extremely moving, and he's shared a poem for the Ichthyosis Awareness Month project.

"On September 27, 1989, an Alien was born. Somewhere. Probably. But on that very same day, I, Nick Jones, also emerged onto the scene.

Born prematurely, probable result of having Congenital Non-Bullous Ichtyosiform Erythroderma, and having hearing problems from day one, life wasn't looking towards the "normal" route,..says who? Not Me!

I've never let Ichthyosis stop me doing anything, I do what I want, when I want, and deal with any consequences later.

 

From a young age I've always been very sporty, Football is my main game, wind, rain, blistering heat, if folk are playing football, I'm there. Who cares if my skin disease means I can't sweat? I don't. I'l go, I'l play for hours, I'l overheat, so what? I had fun, n when I get home I'l lie stark bollock naked on the cold kitchen floor for a bit, problem solved.

There are many challenges in life, some people call them hurdles, I prefer to think of them as gauges, measurers, to see how determined you are to achieve what you want to achieve.

I left school at 16, had no clue what to do with my life, and a year later I had decided I wanted to become a Joiner, do you know what I did? I became a Joiner. I studied full time at a local college, battering my hands on the tools, the wood, the machinery, but it was more than worth it, I got what I wanted, the certificate to say I was a qualified Carpenter/Joiner.

 

I've heard a lot of folk with Ichthyosis say things like, "I know my limits". How? How can you draw a line under anything you want to do and say "No"? Limits? Fuck Limits!

There is a lot of ignorance in the world towards Ichthyosis, as there is with any disability, but its usually down to lack of education and awareness. Stick together, share the love, teach the world.

"The condition is a blessing in disguise,

You're strong. He's strong, She's strong, Together, They are untouchable."

Well I'm 23 now, I've fell off the wood work career path and I am seeking new adventures. I like my travelling, so might try to combine that with my next career choice, I've drifted around Europe a bit, France, Spain, Holland, and I'm off to Asia in May, Turkey to be exact, It will no doubt be far too hot, but who cares, they got Waterslides!

I'm going to love you and leave you, with a poem I wrote a while back, hope you enjoy,

Cheers for your time,

Nick Jones!

 

What do You see?

when You stand there staring at Me?

as if to say I can't be free,

as if to say I can't be Me!

Give Me an insult I haven't heard,

Then at least I Might take it on-board!

Flakey; heard it

Snowman; heard it

cornflakes, skin kid, heard 'em all,

Ya keep on pushin' but I don't fall!

What do You see?

when You stand there staring at Me?

It scared you, I liked that, You ran away screaming,

And that's why I chased You, (in-between creaming!)

I'm "different"? HA, You're all the same,

You should hang Your heads in shame.

What do You see?

when You stand there staring at Me?

You were a Bully I was a Kid,

You treated Me like an invalid.

I aint contagious but You thought I was,

so I'm guessing that makes ME boss!

...What do You see?"

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Joseph's story ~ "Everything is going to be ok."

Joseph's story is one of hope. His Mum, Laurie, writes of the uncertainty when Joseph was born, and then how as he grew, life turned out ok - he's conquered the odds. Joseph leads a social and active life. And Laurie has a positive message to pass into new parents of children with Ichthyosis. Thanks Laurie.

(Joseph and his little sister Faith.)

"My name is Laurie and I live in Wynnewood, Pennsylvania. I have four children aged 14, 11, 7 and 4. My two youngest are affected by (nonbullous) Congenital Ichthyosiform Erythroderma (CIE), a type of Ichthyosis also now called Autosomal Recessive Congenital Ichthyosis (ARCI).

While all my kids are pretty amazing, I want to share about my seven year old, Joseph because he has more experience with other children in a setting outside the safety of home than my other affected child.

Joseph was born at 32 weeks and was a collodion baby. We were lucky to get a quick diagnosis. We were unlucky to get a diagnosis unaccompanied by facts. We were told it was most likely fatal, he had about three days to live, and we’d better gather family. We were terrified.

A nurse in the NICU approached us and said she had seen this before. She told us our son was going to be okay. She gave us hope. We liked her.

Within three days, a dermatologist with experience with Ichthyosis (she had one patient!) came to see us and told us that he would be okay but that there was no cure. She had little or no information for us.

By the time Joseph was six weeks old we believed the following: he may have a shortened life; he would not play sports; he would not make friends; people would be cruel; he would be severely limited in mobility and development, and he would lose his hair. We were sure it was going to be much harder for him than could ever be fair.

Some of these things are true. He has extra precautions. He has limitations. He has to take more breaks. He gets dehydrated and overheated and frustrated. His skin hurts sometimes and itches most of the time. He despises his cooling vest! He has some mobility issues. Some people are cruel.

He has a 504 care plan and weekly occupational therapy at school and he is doing well. He has friends. He gets invited to birthday parties. He is social and comfortable among his peers. When I pick him up, he high-fives at least six boys on the way out. He wears a cooling vest at gym and recess and plays wall ball, kickball, and basketball. He is on a baseball team.

Ichthyosis is part of who he is. Part of what makes him an incredible boy full of life with an amazing smile and gentle spirit.

If I could tell every new parent facing the same diagnosis, I would tell them that that it’s as true for them as it has been for us; everything is going to be okay."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

Ichthyosis Awareness Month: Shannon and Lauren's story ~ "Our community has no single country, no identified boundaries. Information is shared with a click of the mouse...Hugs have gone virtual." "

Shannon and I know each other through DeDe. She has an eight year old daughter called Lauren who has Harlequin Ichthyosis. DeDe's son Evan is pictured with Lauren below. Shannon writes about the gift of community spirit that comes with being affected by Ichthyosis.

"Community

Definition

1: A unified body of individuals

When asked to talk about my experience with Ichthyosis, “Community” is one of the first words that now come to mind. That has not always been the case, however. Earlier in my journey, words like “fear” and “isolation” were more often expressed. “One in a million”, when dealing with a life threatening condition is not unifying. “Extremely rare” is not comforting. Even with the benefits of our world renowned medical system here in Boston, our doctors were referencing text books as they struggled in their care of our new baby. No one was able to provide that sense of community. That “I know” and “I’m here”.

That all changed with one phone call made in the Fall of 2004. A call, I admit I had avoided making until that day. That ordinary day, with my baby sleeping soundly, I picked up the phone. I dialed those twelve numbers that would change everything. On the other end of the line was Jean, of FIRST, The Foundation for Ichthyosis and Related Skin Types. “You are no longer alone” was what she said and in that brief exchange it was as if she had reached through the phone and had given me a reassuring hug. Jean was able to put me in touch with Patti, whose daughter Hunter we all know and love, and an instant connection was made. Hunter and Lauren are pictured below.

I began trolling the bulletin board at Ichthyosis.com and found other parents dealing with the same questions we were. “What creams are you using?”, “What is your favorite scalp treatment?”, “Do your children scratch?” That is where I first met Lisa, Suzanne, Jennifer, Morgan, Kim, and many others, all mothers just like me with kids just like mine. We were indeed becoming a community.

In 2006, our family attended our first FIRST Family Conference in Atlanta. Completely exhausted from the day’s travels with our now toddler and needing to wait for our room to become available, we decided to explore the hotel and convention center. It was in the pool and spa that we first encountered Craig, Sarah and their little girl Ema. It was their first conference as well and we quickly became friends. It was only yesterday that I heard Sarah’s familiar voice on my phone’s answering machine and as always it made me smile.

Erin, Chip and Ethan we met later the next day. Over the course of the weekend, Erin and I spent all kinds of time sitting on blankets in the convention foyer, with our kiddos both of whom were too young, at least in our minds, to be left with the provided child care team. Those informal exchanges about life and our day to day routines are priceless memories. Our little community was growing.

“What kind of Ichthyosis does your baby have?” followed by “She looks good” is what I heard over a booth partition in a Chicago hotel restaurant where we were attending our second FIRST Family Conference in 2008. My introduction had been made to Ana and her amazing mother Jennifer. The girls chased balloons up and down the hotel lobby, while Jennifer and I talked. They would travel to Boston not long after that day, where we would spend a sunny afternoon together in the city making plans for our trip to their part of the country.

It was in Orlando at the 2010 conference that I heard news of a baby having been born in our neighboring state of Connecticut. De De had her own journey and when ready made her own phone call which would link us together forever. We were honored to attend Evan’s 2nd birthday and were welcomed by his extended family. We only just returned from a sleep over where Evan and Lauren colored pictures for De De sister encouraging her efforts in the Boston Marathon, only to then share in the tragedy of the bombings in a city we both called home at one time. While I am old enough to be her mother, I consider De De a sister, unified only in part by Ichthyosis.

2012 and our little girl was growing up. It was in Denver that I realized that her community was growing too. She couldn’t be contained, jumping from one friend and activity to another. She wanted less to do with us and more to do with her new friends and her new freedom. I knew that these were kids that she would shares brief email messages of “How’s school?” or “What’s your favorite One Direction Song?” or “See you in Indianapolis”. I was able to meet Leandra and Lauren and knew our community was strong.

With facebook, blogspot and other social media, our community has indeed grown. Thanks to the efforts of Kristi, De De, Courtney, Jane and of course Carly, our community is being represented to the world and our shared goals are being expressed. Their pages are often dedicated to Ichthyosis, awareness and research. Our community has no single country, no identified boundaries. Information is shared with a click of the mouse. Comfort is given via messaging or text. Hugs have gone virtual.

I want to thank Carly for letting me borrow this forum and of course all the efforts made by FIRST. Please support their efforts by visiting them at www.firstskinfoundation.org."

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.