31 May 2014

Ichthyosis Awareness Month: my story. I am not a sufferer.

May. It was a busy month. Five countries, five plane trips, two longish train trips, lots of freelance writing, three writing classes taught, a bout of very sore skin, a lurgy that could only be cured with doses of brandy and dry ginger ale and 41 stories written by people experiencing Ichthyosis and then edited and published on this blog.

Forty one! I was getting messages and emails throughout the month from people asking me how they can share their story in the Ichthyosis Awareness Month Blog Project too. I published every story I received, editing only for spelling, paragraphing and hyperlinks. I wanted to leave all stories uncompromised. I wanted to give people a voice, in a trusted and supported space. And I think I did that successfully. While it's been a huge amount of work on my end, I've always so proud to share each post - to showcase the beauty and journey of each contributor.

These 41 people were courageous. They are so courageous, even when in the past they haven't been confident to tell people close to them about their skin. And now they've told the whole world. The blog's had almost 80,000 hits in May. The contributors been courageous enough to look the world in eye when they have encountered people so uncomfortable with their appearance they haven't been able to look the contributors in the eye. (That's my quote up there. I said it for a little TV thing I did.)

I love how the Ichthyosis Awareness Month Blog Project has brought people together. The contributors became friends with each other and readers really interacted with them. There was so much empathy shown. But we also learnt that everyone's Ichthyosis is different and we have different treatments and appearances.

Kelly noted "I love learning about Ichthyosis thanks to Ichthyosis Awareness Month (IAM). So many different varieties of Ichthyosis yet us with it are all the same having to do our baths, creams and more! I have Ichthyosis but knew a little before this month due to many docs knowing nothing about it so I'm glad IAM exists."

The support that was generated from readers empowered the contributors and also encouraged others to tell their stories - in the form of blog and Facebook comments. We've received so many wonderful comments and genuine questions - and not one negative comment. It's been wonderful seeing discussion generated about Ichthyosis, what it's like to look different and to treat people who look different. I've saved many of the wonderful comments to reflect on and share.

Sam, who was very reserved to tell her story, wrote:

"I wrestled for weeks to get my story to Carly for her project for Ichthyosis Awareness Month, as I come from a generation where networking didn't exist & even now I feel as though some may frown upon my having shared my past as openly but Carly Findlay & her awareness campaign work & skills in presenting our stories is fantastic and I thank her for encouraging to me do the article despite my reservations & it coinciding with a roller coaster week of family events. Thanks for reading & commenting."

Robyn, who watched my video, told me:

"I just watched your video with my 3 year old daughter who has ARCI, and she repeatedly kissed your face and said she loves you, then turned to me and said "mama, I wish you were like that". Brings tears to my eyes, even though her type is different than yours it is so clear to me how connected she feels to you, without even meeting you. You and her are the norm in her eyes, and I'm the one out of place : )"

I reassured here she was a great mum and that it's a huge learning curve for all parents.

Terry, who wrote her story - and after 56 years, has found others with Ichthyosis after feel alone with this condition, messaged me after reading Darin's story:

"I just had to tell you Carly, as I read Darin's story this morning, something came to me that I not realized was there! I have always avoided people touching me at all cost, but never understood why I felt this way. I have always been sensitive to people questioning me about my skin, but could not figure out why I don' t like people touching me. After reading this story, I finally realized why I have been this way my whole life. Sharing these stories has changed my life!

We are so blessed to have such wonderful men in our lives! I really do think that being "different" has made us more sensitive, caring people! I have gone 56 years without having anyone to talk to about this except my own family, but meeting you has changed all of that, and I will be forever grateful!"

Bobbi who has Ichthyosis but hasn't told her story yet said:

"I would like to thank all of my friends and family who is taking the time to read the stories. It means more than you can ever understand. Carly I want to thank you for doing this blog And for having the strength to bring awareness And education for The people with ichthyosis that don't have the courage to speak up! I would also like to thank the people that have told their stories!"

Cheryl, one of our committed readers, wrote:

"You've brought people all over the world together. People who otherwise wouldn't have met. You've made a little community out of people with ichthyosis, and the people who love them. (That's me, if you hadn't guessed!) So proud to be part of such a lovely network of caring people."

Alex, a friend who is a dedicated reader, wrote:

"I'm astonished by the recurrent theme of doctors telling these parents that their children's lives will be so awful and unfulfilling. I think this project for awareness month is doing exactly what you intended: giving people the chance to see beautiful, interesting people who have icthyosis as a small part of their life not necessarily a defining feature."

Joanne, who I went to school with, wrote to me:

"Brenna and Connor melt my heart. I love Courtney's message here. Its what my children have been made aware of. Yes, someone with a visible difference may arouse curiosity in my child. Yes, my child knows that they can ask me about it later on, but at that moment they know that person is just enjoying their day and has no responsibility to my child to educate them.

Recently we were served for about half an hour in a shoe shop by a man who had half of his arm amputated. My son didn't bat an eyelid. My daughter noticed his arm and then just got on with the shoe shopping. Just as we were about to leave, the man bought up his arm. I'm wondering if he was curious as to why my children didn't say anything about it. Olivers response to the man bringing it up was along the lines of- yes you do. Some people have no legs, some people are blind. They are just getting on with their day. Its not my business. But I like to say hello to everyone."

Carly-Jae said:

"Oh, the irony. There's a women's health magazine that has Michelle Bridges on its cover, sans makeup. The media are calling her 'brave', and I just shake my head with what we define as brave or 'heroic'. Samantha constitutes brave for me. Samantha, what an inspiring woman you are. YOU are brave for being able to live your life so authentically, when you would have had (and still have) a rough time of things. You rock xo"

Naomi, who has a disability, emailed me:

"Just read your latest blog post, & I'm a blubbering mess of emotions. I want to give that family a big hug. Reading Aurora's accounted had me thinking back to my childhood & how I struggled with exclusion & bullies. This post touched me in a huge way. I forwarded this post to my Mum, who also could empathise with the childrens mother.

Carly, you are a great writer, I have thoroughly enjoyed reading all the posts of the Ichthyosis Awareness Month."

Abby, who has Ichthyosis, wrote:

"Hi! I just wanted to say thank you so much for putting in so much time to do ichthyosis awareness month on your blog, especially while you were on vacation. I look forward to reading all the posts and i have even met some new people! Like Shawnee, the younger one. I friended her after reading her story and one day after reading her status I messaged her and we get along really well! Thank you so much for doing so much for ichthyosis! I really look up to you and I hope one day to be able to meet you. You are wonderful beyond words can say!"

And this from Vanessa.

"Every time I read someone else's story I feel pain and regret that I was ever mean to anyone about their appearance for whatever reason."

Those words are why I do this project, they're why I tell my own story and others'. I am so incredibly proud.

 

I've learnt a lot about Ichthyosis this year - both about the physical aspects and the emotional. Many of the stories showed great struggles - some I've never experienced or even imagined I'd experience. There's been recollection of physical bullying, of parents being told they're harming their children, of exclusion and pain. But all the stories - even the sad ones - show incredible hope and resilience.

I genuinely want to thank everyone who has been so supportive of the IAM Blog Project. To all 41 contributors and their families - thank you. There wouldn't be a blog project without you. You've been wonderful - your stories are amazing and you made this a success. There have been people who shared each post every day - a special mention to Kelly and Nelly and Pery and Kitty and Laurie and Joanne! The pictures on Instagram have been liked and commented on multiple times. There's been amazing regular commenters on Facebook and on the blog. And when I was overseas in a different timezone, I put a call out for help because I could not cope with doing the social media promotion on Australian time (10.00 pm UK time) - especially while I was unwell. And people came to my rescue - a special shout out goes to Margaret (whose granddaughter has Ichthyosis) who did so much social media work promoting the posts in relevant Facebook groups. I'd also like to thank Adam for all of his encouragement, promotion and belief in me. He did the most wonderful thing the other day - made a selfie for the FIRST I Am campaign. My heart melted.

I want to indulge a little in sharing my own story now. I've thought about the message I put out in the first post of this series - the words from Darren Hayes.

"The thing that make you unique make you a target...

The thing that makes you unique sets you apart."

It's often this uniqueness that people don't understand that makes them think our lives are less than ideal. They push their experiences and expectations onto us.

I get told I suffer. Sure suffer is a word that could be replaced by experience or live with or hurt or be miserable or be in pain or display symptoms of. But for me, not suffering is a choice. I said 'I am not a sufferer' on my I Am selfie. And I believe it. I am not a sufferer of Ichthyosis.

I get told by strangers on tram that they're doing pretty well compared to me. I am described by doctors who don't know me well that I suffer from this skin condition. I correct them, saying I'm living with it.

I get told by people with Ichthyosis that I suffer.

Am I told by others that I suffer because they do?

I don't suffer.

There's is often debilitating pain, the hot pounding of my legs when they're particularly sore, and the race to put cream and them and elevate them quickly after a shower. This is not suffering. It will be over soon, I tell myself.

I understand it's my appearance that confronts others. Apparently I look like I've been badly burnt by fire or fell asleep in the sun. I get that it looks sore. But to assume I'm suffering is to assume that I am not happy in life. The assumption of suffering is an insult when I don't feel like I am. It's a lesser life assumed.

I work a full time job and freelance on the side. I am in a loving relationship. I have a good sense of self and positive body image. I have wonderful family and friends. I go out and see bands and eat and travel the world alone. I have huge goals and want to keep doing more to promote appearance diversity. I've met wonderful people along the way. I see opportunity in the hard times.

This is not suffering.

Sometimes my positivity makes people as uncomfortable as my appearance. They're not sure why or how I can be happy. How can I be happy when I look like this? Like something they want an operation for. Like something they tell me they'd be too scared to leave the house over. But you know what? Most days I'm laughing out loud at the thought of a wonderful life now and in the future. I'm not resentful of difficulties in my past. I'd rather rise above that and not suffer. I believe it's a choice.

There are two verses in the recently deceased Maya Angelou's poem Still I Rise that I identify with.

Aren't those words just amazing? "I laugh like I got gold mines diggin' in my own back yard." I think about the way we rise up against the cruel words and stares directed at us. It could be easy to be a victim, but it is so much more satisfying to rise, to live like we were never expected to. Still, I rise. Despite. Despite the pain, the stares, the ignorant and cruel words.

I don't suffer.

I live.

I celebrate life.

And so does everyone who has had the courage to share their story in the Ichthyosis Awareness Month Blog Project.

(For those who still want to submit a story for my blog - on Ichthyosis or appearance diversity - you can still do it but I won't be publishing it in May because it's all booked out. Happy to publish your stories throughout the year. Email me through the contact form.)

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

30 May 2014

Ichthyosis Awareness Month: meeting Matthew, Aurora and Michael in Chicago. "We people who have a skin condition like this have to live a harder life then you other people do."

I had dinner in Chicago with a family that has three children with Lamellar Ichthyosis. Denise and Mike - the parents of the children - had driven an hour one cold Sunday night to have dinner with me. We ate deep dish pizzas, talked and laughed and nodded in empathy.

The children and I talked about koalas, how we react to people staring, coping with bullies, whether there's pizza in Australia, and how it's better to surround yourself with a few close friends. I told them that their uniqueness is special and there aren't many people like us in the world.

Michael, the oldest boy, doesn't say much. But he told me he wants to be an NFL football player when he grows up. He has just started playing - his parents were worried about him, but have decided to let him do the sport he's always wanted to do.

Aurora talked about being excluded and my heart broke. She said other children don't want to pick her for school sports because of her skin. I could see her mum getting emotional too. Just awful. Denise said that girls are the most cruel - and immediately I thought back to the time when I was at school. It was so isolating. I just wanted one friend who would stick by me.

I told them all that it might be a long time away but things got better for me when I started to work and study. I found my tribe. I told they will too.

Matthew the little one was so beautiful, with his spiky hair, cute smile and infectious personality, he lit up the room. He was running and jumping and later on cuddled me and played peek a boo. He even held my hand. So sweet. We all sat down for photos and Matthew was so cheeky, giggling and wriggling all over the seat. One of our photos together shows him upside down and me laughing a lot.

But he covered his eyes when we took a selfie as he doesn't like seeing his face. It was heartbreaking. If only he knew how gorgeous he is. (I remember that when I was a child I didn't like posing for photos or seeing myself in them, especially when my face was scaly.)

I left overwhelmed with emotion - happy tears about how we all connected and had fun and hoping we will meet again someday. Eight year old Aurora asked me if she will see me again. I said I hope so, and encouraged her to write to me. She's been sending me short messages via her mum's Facebook, and she's written a piece for Ichthyosis awareness month.

"The life of Ichthyosis is not fun but you can be good at some things that some people can not do. For one is like going swimming because you get really hot in the summer and maybe in the winter but it would be easier cause people like us get to go swimming. We people who have a skin condition like this have to live a harder life then you other people do. We have to keep people from staring at us so if you can be kind and do not do that it will make us children with this skin condition Ichthyosis more happier. If you do not stop staring at us you would hate to be us so please do not stare at us. So when we live we can not be happy because maybe some person got us mad by saying you look gross, you look ugly, or maybe you look gross get away from me. That's what makes life so upsetting when people do not be nice to us and if you do be nice to a person like us that will make our day happy!"

Denise adds...

"I decided to add a few of my own thoughts about being a Mommy to kiddos with Ichthyosis....

I remember shortly after our oldest son Michael was born, the hospital calling in the social worker to talk with us. She had stopped by several times throughout Michael's two week stay at the hospital and she and I had a few conversations during that time. One conversation that still remains clear in my mind is the one where she acknowledged my feeling of sadness, not due to what was physically going on with him at the moment, but for sadness and grieving over the loss of what we had such perfect expectations for within our son. Don't get me wrong, he was and still continues to be perfect in our eyes. But all the things that make him perfect to us, his sense of humor, his intelligence, his kindness is not what the world sees in him when they first look at him.

This is something I still continue to struggle with ten years (and three kids with Ichthyosis later). For me, as a Mommy, it is by far the worst thing to deal with in regards to Ichthyosis. The world says "what really matters or counts is what is inside", but everyone knows that is not what is really thought when seeing someone who looks "different", whatever the reason or case may be.

Trying to raise children who look "different" and reinforcing in them that what really matters IS inside has become a huge challenge due to the constant staring and whispers that accompany us EVERYWHERE we go. So as we continue to live our life with Ichthyosis, I will continue to do my best to build self worth and compassion within my children so they continue to grow into caring individuals that can weather the storm and stay strong when the world says they are not "perfect"."

 

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

29 May 2014

Ichthyosis Awareness Month: Tania, Litia and Zadie's story. "I know I'm a lucky mum."

Last year I had lunch with a wonderful family - Tania and Edwin, and their two little girls Litia and Zadie. Litia and Zadie were funny, artistic and really good conversationalists. They were cute and giggly. As I wrote last year, They guessed my age at 90 and 20, and then asking "how come you are 31 Carly, Why?!", quickly adding that I was born "many many many years ago"!

Litia drew me this picture of her and I, which I treasure. She's invited me to come to her school to talk to her class, and calls me her new friend. The cutest!

Litia told me she wants to be a school teacher, a swimming teacher and hairdresser but doesn't know what days she will do those jobs on, and Zadie said she wants to be a princess and the The Tooth Fairy!

It was a lovely lunch - gosh this condition has afforded me the opportunity of meeting great people!

Tania sent me this beautiful story to publish this week. The girls have Congenital Ichthyosis form Erythroderma (CIE). Tania states that she's not known any different because she's had to apply creams since day one of Litia's life. I love how she's described their personalities - they really did have a great impact on me when I met them. And Tania is a great mum - compassionate and encouraging and so caring.

Meet Tania, Litia and Zadie.

"I am a lucky mum. I have two beautiful daughters who mean the world to me. My older daughter, Litia is the cautious observer. She likes to take a good look at things before she tries; she can be reserved on first meetings but once she feels comfortable, she may not stop talking. Zadie, my younger daughter is bold, bright and very melodramatic. She does not stop talking, even when she is sitting on the toilet. Both my daughters have ichthyosis.

When Litia was born via c-section (she was breech), maybe I was too drugged up or high on the changes in hormones that occurs when you have a baby, but when the specialist diagnosed her as a collodion baby, I didn't care. As soon as I saw her, I fell in love with her, and whatever came with her, was it. So, creaming her all over her body at each nappy change became the norm. And carrying a tub of Dermeze around in the nappy bag, was also normal. And in those heady days where you have a newborn, so much is new that I have never really known anything different.

The funny thing was that when Zadie was born, the attending paediatric specialist quite excitedly said, 'she looks fine 'or something to that effect, but my husband took one look and said, 'no, she is looks exactly like Litia did' which she was. But that was it. In the end, we are what we are.

It has only been over the succeeding years that sometimes I realise that we need to do things slightly differently, because of their ichthyosis. I mean, aside of their susceptibility to overheating or sensitivity to cold. Growing up, I went to the beach a lot and loved it. But with our girls, particularly Litia, we last maybe an hour, before she starts getting uncomfortable, her feet sting because of the dry skin and cracks. They have actually swum in the sea two times in their lives so far, but both times ended with hasty exits, some screaming and quick showers. We mainly do other things like going to the zoos, shopping, cafés and play parks. They love swimming in swimming pools and that is fine for their skin.

Litia started school last year. And whilst she is one of the youngest and does have her skin to contend with, she is now doing well. She is a beautiful, sensitive and confident six year old girl and I am so proud of her.

Zadie will start school next year. She is my social and fashion butterfly; very bold and confident. I have less worries about her going to school.

I don't know what the future holds for them; I have had the occasional insensitive strangers come up and tell me what I should do or assume they have a form of eczema. Litia has had some comments or adverse behaviour about her skin at school, but so far so good. I can only hope and pray that my husband and I can help them become confident, secure individuals. Whatever will be will be; but I know I am a lucky mum."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

Ichthyosis Awareness Month: Bailey's story. "I began to believe that I am beautiful. I chose to accept my skin and began to love it."

Bailey was one of the stars in last year's Ichthyosis Awareness Month Blog Project. This past year she's had success in beauty pageants - not only showcasing physical beauty but talent and intelligence too. She's got Lamellar Ichthyosis and a very positive outlook. She did a video for FIRST:

(The photos of Bailey in the white dress are by Joelle Watt Photography. She tells me "The first four photos are from a photo shoot that told my story (the first two specifically deal with the insecurity and feeling trapped in my skin that I used to have...the second two deal with the joy, freedom, and confidence I now have in it").

I love how Bailey is showcasing her physical beauty in the perhaps fearless way that women without skin conditions do. We need to see more diversity in the beauty and fashion industry and I'm glad Bailey is such a trail blazer.

Meet Bailey.

"Inspiration.

What do you think of when you hear that word? Most of you probably thought of a person. Maybe it was a family member like a grandmother, a father or an aunt. Maybe it brought to mind a celebrity that you admire or a role model you’ve looked up to since you were a child. Or perhaps a few of you thought of a thing that brings you inspiration like nature, photography, or music. Well, for me it might have been Shirley Temple as I adored her as a young girl. I wanted to be her; which I have grown a fond love for dancing, acting, and singing! However, now the word brings to mind an experience.

You see, I was born with a rare skin disorder called Lamellar Ichthyosis. There is no cure for it and it was a struggle growing up “different”. I was made fun of, avoided, stared at, and treated like an outcast at times. I became extremely shy and insecure. I felt worthless. Over time, I began to believe that I am beautiful. I chose to accept my skin and began to love it. Today, I have complete confidence in who I am and see the many blessings that have come out of living in my skin. God made me unique and different for a purpose…to be an inspiration.

I now use my story to encourage others. Sometimes I don’t need to say a word. People just see my confidence in my appearance and they are moved. Other times, I might share my story with a teenager who is struggling with image issues to let them know that they can overcome. Every month, I hold a Princess Tea where young girls come dressed up as princesses and learn the truth about beauty, about always being themselves (not what the media teaches).

In the ichthyosis community, I constantly try to let those like me know that we can have a pretty normal life and help them find the blessings in having this. Even in the talent portion of a pageant I competed in, I did a dance that told my story. Sure, there are still times where I struggle with my image. I am human after all! But it is usually short-lived as I remember how far I’ve come. Basically, I just want to share my story with whoever will listen whether that is in my workplace, in my hometown, with the media, or even in another country!

And I want to encourage YOU to be an inspiration! Use the experiences in your life (positive or negative) to reach out to the world around you, to help someone else that is going through the same thing, to shed some positive light. You never know where it might take you…"

 

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

28 May 2014

Ichthyosis Awareness Month: Jayden and Jane's story. "there are people in this world that are born a little bit different and that it's ok,"

Little Jayden has Harlequin Ichthyosis - his mum Jane writes of the challenges of giving birth to a baby with a very rare and severe skin condition. As she writes, Ichthyosis can affect so much of a baby's development - from feeding and weight gain to movement. She cites the stares Jayden receives as being the hardest thing to deal with. The assumptions that strangers make about her parenting are utterly intrusive and accusatory. I really hope that by sharing these stories people will think twice about making comments about a stranger's appearance - especially that of a child.

It's a small world because Julie, mother of Jack (who has Netherton's Syndrome) told me she and Jane are friends.

Meet Jayden and Jane.

"It all started in 2009, my partner had just left his job on the front line in the British Army and I was in my last year at college, training to be a beauty therapist, my dream was to travel around the world whilst doing the job I love on cruise ships. I had each step of my life planned out, until I found out i was pregnant, all of my careful planning had to be put on hold. As the weeks passed by we were ecstatic to announce we were expecting a perfectly healthy baby boy! 9 days after completing my course and at 38 weeks pregnant, my waters broke and I coulnt contain my excitement that my baby woud be here so much sooner than expected! 5 days after and after 15 hours of labour I was finally rushed down to theatre for an emergency cezarian. Jayden was born 9 days early weighing 6lbs 4oz.

At birth it was clear to see that Jayden’s skin did not resemble that of a newborn or of anyone else for that matter. I didn’t see Jayden right away due to complications during the cezarian, I had to be put under general anesthetic. When he was born he was rushed straight to SCBU (Special Care Baby Unit) he was put in an incubator and on a gel bed to protect him from the outside world. When I finally woke up my partner could only describe Jayden as looking like The Rock Man out of the film The Fantastic Four! Seeing Jayden for the first time was hard, he was so tiny and his skin looked so painful and sore, he was hooked up to all types of monitiors and he was being tube fed as he couldn’t suckle. A team of specialists had gathered in Jayden’s room to see if they could obtain information so we could have a rough idea of what condition we were dealing with. That was the first time that we heard the word Ichthyosis.

Jayden’s condition was severe and we were told to spend as much time with him as possible because he may not survive past a few weeks or even days. In the following days we were told all about ichthyosis, we were told things such as there is a high risk of fatal infection, respiratory failure and dehydration, being just some of the things we were faced with in our newborn babies future. Jayden was tube fed a high calorie milk called Infitrini, this was to help him gain weight, his weight was dropping rapidly due to all his energy and calories bring used up by the rate of his skin growth. The hospiatal chaplain came to visit us to pray for our little baby and the rest of our family.

At 2 days old Jayden was transfered to a childrens hospital. That night he had his first operation to remove the colodion membrane from his hands and feet. As I was still in hospital all I could do was wait and hope for good news. After that I didn’t see Jayden for 5 days as we were in different hospitals, so I made the decision to discharge myself so i could travel to see him. Jayden baffled hospital staff because at first he looked like he had a condition called Harlequin Ichthyosis but on closer inspection showed he didn’t have the typical characteristics of a harlequin baby. Later on, genetic testing proved he didn’t have the typical mutation on the ABCA12 gene as other harlequin sufferers, he has new mutations on this gene that have never been described before but are still inkeeping with Harlequin Ichthyosis. Jayden was oficially diagnosed with Harlequin Ichthyosis just before he turned 2 in summer 2012.

When Jayden was eventually allowed home life was difficult for a while, we had endless hospital appointments to attend and it was hard for us to get used to all the new names we came across such as a dietitian, peadatrician, ENT, opthamologist and dermatologist! People stared at Jayden everywhere we went, above all this was the hardest thing to deal with, it broke my heart knowing that strangers were looking at my beautiful boy in horror and disgust.

In September 2011, when Jayden was around 15 months old he was referred to a physiotherapist to help improve his moblilty, I longed for Jayden to be able to walk and even run around with his friends and I could see it when I looked at him that he was so desperate to get up and play with them too. It took him a long time to walk but at about 17 months old he took his first few steps alone! He was still very unsteady and fell over a lot in the following 6-7 months, it was so difficult to winess each fall because every time he would cut himself which would cause him to bleed. Although he was doing very well he still struggled to do things such as clumb up and down stairs and get down onto the floor and stand up by himself. It wasn’t until his liver biopsy in 2012 that he began to crawl, by this time he was around 27 months old.

At the start of 2012 we discovered he had abnormal liver function test results, he was admitted to hospital for numerous tests and ultrasound scans. In September 2012 he had to go under anesthetic for a liver biopsy and endoscopy. The results showed he has an enlarged liver and spleen and severe scaring on his liver, the cuase of the scaring it still unknown. If specialists had to guess, they would put the scarring down to the drug Acetretin he was on fom birth, althoughto their knowledge this has never happened to anyone who has taken the drug before. Jayden was taken off this drug months before as his skin was becoming very sore and he had severe photosensitivity, which is a side effect of the drug.

In February 2013 he had operation no3, his plastic surgeon grafted a piece of skin from his arm and put it in his fingers to help straighten them out from the fixed fisted position they were in. He also had his ears deep cleaned to remove any skin build up and 4 front teeth removed due to tooth decay which he got from drinking lots of milk throughout the night to aid rehydration which resulted in the milks natural sugars sticking to his teeth despite me brushing them twice daily. In the weeks after his operation he was put under sedation a few times to change the dressings and clean his wounds. In May 2013 he started seeing a occupational therapist to help with his hand movement. In this same month he also started seeing a speech therapist which he is doing so well in!

The past 3 years have been very up and down for Jayden and the rest of the family. He has been through a lot and come a long way but he still has a long way to go. We are already talking about his next few operations in the coming years, not to mention the constant skin care routine he has to go through and his daily bath and shower to aid the skin shedding process. We have tried many different creams along the way but are currently very happy with our daily routine. Jayden has never had a full nights sleep due to the soreness and itchyness of his skin, he takes a medicine at night calles Alimemazine which helps him sleep and reducs itchyness. Some nights we put him in Dermasilk pyjamas which help to keep him cool and stop him from overheating-which is another struggle especailly in the summer months.

Jayden is a happy little 3 year old just like any other! The only difference is, that because of how unfamiliar most people are to ichthyosis some people can be very cruel to both Jayden and myself, parents have pulled their children away from Jayden so they do not catch anything from him-may I add ichthyosis is not cantagious its genetic!

People say that this is a cruel world we live in but until that cruelness is directed straight towards your family, then you have no idea. I have also been acused of leaving him in the sun to become sunburned and even having spilled hot liquid on his skin for him to become scalded. Some people can be very inconsiderate towards our feelings which is why raising awareness for ichthyosis is so improtant. Jayden started nursery in September 2013 and I am hoping he will settle in well and make lots of new friends while he is there.

I don’t think there will ever be an end to Jayden's struggle but I hope that the more people know about ichthyosis the more people will begin to understand and accept that there are people in this world that are born a little bit different and that it's ok! Most people who meet Jayden become instantly captured by his bright blue eyes, his fun personality and his general love for life!"

 

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

 

Ichthyosis Awareness Month: Brittany's story. "After years of figuring out that I was meant to be loved I started loving myself…including my skin."

There's an ongoing theme with these stories for the Ichthyosis Awareness Month Blog Project - and that's gratefulness towards the skin condition that has made life such a challenge. Brittany writes about her gratitude to Ichthyosis shaping her current outlook.

She spent many years struggling with her Ichthyosis - especially coping with the taunts from other children. And then she found her husband, and found God - and eventually she found love for herself, recognising physical beauty in herself. She's a successful woman - a business owner, wife and mother.

That Brittany calls herself "a real life mermaid" makes me smile. I love that after so long she finally loves herself - and is passing that sense of self respect to her daughters.

Meet Brittany. She's got Lamellar Ichthyosis.

"Growing up in the Southern state of North Carolina with Ichthyosis was not easy. I grew up in a place much like a lot of places on the earth where your physical appearance is very much your identity. I was always told, what’s on the inside is what counts. But, growing up I felt a difference of opinion.

In North Carolina we have 4 seasons. 4 different changes. Cold winters, and HOT summers lead to skin craziness for someone with ichthyosis. I struggled dealing with the fact that I had an abnormality that everyone else I knew didn’t, and I was ashamed of it as a child.

I remember crying because my skin hurt, but more because I felt ugly. I felt hideous. I had a bald spot on my head from my head where hair never grew, and not to mention I’m only 5’1 in my adult years! EVERYONE always commented, “Is your life that stressful? YOU’RE BALDING!” I begged for hair transplant surgery knowing that it would never happen.

I always wore pants, never shorts because unfortunately I was pasty white, and scaly. I was embarrassed, and in those HOT summers I would get so hot, and then just go inside because I had to cool off.

The flip side of that is growing up in the south you’re expected to treat each other with respect. Although most kids did there were a few that were flat out mean. “Alligator, fish girl, EWWW what is that???” were not but a few of the comments from those kids, but what’s worse I knew the others just didn't say it to my face. Many nights I cried, “God, PLEASE either take it away or me all together! I’m tired of this! NO GOOD can come out of this!”, because I just wanted friends, and people to like me, and not be afraid of my skin disease. I thought I look fairly normal, but then again I knew in my heart what they were saying was true. Little did I know that this was my opening door to realizing who God was, and I began to get curious about what was in this Bible, and such. Because of this curiosity I gave my lifeto Christ at age 16.

I met my now husband when I was 12 years old. The only person to never comment on my skin condition. He never once said a word about it. Didn’t even question it. I never felt so normal with anyone. It wasn’t until meeting my husband that I started to realize that I was beautiful, and started paying attention to the other parts of Brittany that were beautiful. I have beautiful eyes, and when taken care of the right way…my skin isn’t so bad, all those years I just didn't know how.

After years of figuring out that I was meant to be loved I started loving myself…including my skin. I joked with numerous people that, “Well….If you really want to get technical….I am a real life mermaid.” 😉

If it wasn’t for my skin disease, I really don’t know if I would have been truly able to love myself, and give that kind of love back to others. It’s taught me that I set the bar of respect for myself, and that if I don’t love me…no one else can. Great qualities that I can now pass on to my lovely young girls that I am raising now {None of my girls have my skin disease}.

After having kids of course my skin changed, and I was looking one day some education because I had never actually been to the dermatologist since I was diagnosed! I know for shame! But! The great thing about that is I found FIRST. A foundation for Ichthyosis & other related skin types!!!! I couldn’t have been more excited! I had never met anyone with my skin disease in 22 years! I didn’t realize that there were other people with my skin condition! I cried as I talked with Chris Wassel (from FIRST) about how I was so overjoyed that I had someone now that understood, and people that I could talk to, and build relationships with, like Ms. Carly! Also, I realized that my situation could be worse. My skin is mild compared to many! Finding all of this out I began to become thankful that I didn’t have it as bad as some, and it made me grateful that I am able to do some things that others can’t do.

Since finding FIRST I have realized how my skin disease doesn’t have to hold me back. Although I loved myself now, for some reason I didn’t do a lot still because of my skin disease. I saw it as a obstacle that I couldn’t overcome. It was like a lightbulb that went off!

I now can say that I 1000000% support FIRST foundation, own my own business, am a wife, mother of three girls, and best of all this skin disease has made me have an even closer relationship with God. I don’t know that I wouldn’t have still gave my life to Him sooner, but I do know that He used this skin disorder to open my eyes to Him. For that, and all my other gifts from this disease, I am thankful."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

27 May 2014

Ichthyosis Awareness Month: Sami and Mason's story. "I ask of learn about Ichthyosis for fear my dad might actually be half crocodile."

Sami writes of two generations of Ichthyosis in her family - her Dad and her son Mason. They both have X-Linked Ichthyosis.

Reading her story of the stigma - perhaps self imposed - that her dad felt makes me so sad. There is often great shame in looking different, and also around leaving skin everywhere. I know I constantly brush myself off surfaces I've touched. I hope that her Dad finally found peace with his Ichthyosis.

While at first Sami ignored Mason's diagnosis, she's come to embrace it. This is a heartwarming story and I hope that it installs confidence in others who are afraid to embrace their skin condition.

Her family will do colour run to raise money for the UK Ichthyosis Support Group - you can donate here.

Doing the colour run was initiated by Mason's big brothers to celebrate his difference. So beautiful. You can follow the Facebook page here.

Meet Sami and Mason.

Life for me was a bit different then many other people, My dad you see was a human crocodile! Yes you got it right I grew up with a dad who had the actual skin of a living breathing crocodile. My dad shed like a snake and hid away in his den in our basement. He was very embarrassed by his skin condition you see, he covered himself head to toe even on the hottest of days, he grew a bushy beard and if ever asked why he shed all over the place or why his skin looked different we were scolded and told not to let him hear for he was half crocodile and would eat us up if he ever did hear.

As you can guess we never did speak about his condition, grew up as embarrassed as he was, friends never came around and if they did it were excuse after excuse of why the dead skin was all over the floor, or whymy dad looked the way he did. But still never did I ask of learn for fear my dad might actually be half crocodile.

I became pregnant and had 2 amazing healthy beautiful boys they were perfect and my husband and I decided we wanted 1 more perfect little being to complete our family. Mason was born December 18 2008 and he was this healthy bouncing beautiful boy, but wait something wasn't right! Mason had really really dry skin. I was told by doctors as he was early it was just a bit of dry skin, I knew right away he too was half Crocodile! I looked for answers, for further information on this secret condition my dad had and learnt about X-linked Ichthyosis. I brought Mason to a dermatologist in Germany and he simply looked at my son and said Yes he has it.

For years we ignored this diagnosis, I will admit I was embarrassed, devastated and horrified. I seen the pain my dad suffered and I did not want that pain to be with my son. People are cruel and only seem to be getting worse in this big bad world. I cried, I scrubbed and I searched for answers to some how have a cure but as all who have or know about Ichthyosis there is none. I again ignored the diagnosis almost wishing it wasn't there. Mason has been blessed and is not affected bad so this was an easy thing to do.

Mason is 5 now and the kid has more confidence and love then any other kid I know, he loves talking to people and if you ask him he will name you all his 5 girl friends all of which he is having a hard time choosing which he is going to buy a house for and which he is going to marry (hard times for a 5 year old). Mason loves sports and takes part in an after school sports club, one day my older two boys (Ethan 8 and Caleb 7) came with me to collect him. after collecting Mason the boys played in the park. Caleb came over a bit upset, I asked what was wrong and he told me 2 moms were talking about Mason, they were talking about his funny skin and Caleb did not like it. On the way home we all spoke of what happened, I told the boys sometimes people who don't understand make comments and observations that are uneducated and nasty. The boys agreed it wasn't right to be mean to people who were different and tried to understand as much as they could why someone would make comments about their brother.

A few days passed and the boys were watching telly, a commercial talking about a marathon came on and Ethan asked why people would do such a hard thing. I explained it was to raise money and awareness for things such as cancer, flood relief etc., the boys digested this and were off to play.

Later that night we were eating dinner and the boys spit out the fact they wanted to do a marathon, I giggled as were all tired after running a block but not one to discourage I asked why. The answer hit me like a ton of bricks "For Mason and his skin, so people know he is not a bad person because his skin is bad" My heart melted and that night we searched the internet high and low. We found the Sunderland colour run and we found it was on Caleb's birthday. The boys were all ecstatic "can we can we" they begged so that brings us to now...

We are running the the sunderland 5K color run to raise awareness and money for research into Ichthyosis. We are celebrating Mason's skin and making it something NOT to be embarrassed by, something my boys and everyone around will feel comfortable talking about. We are running to make it so Mason one day isn't half crocodile but instead a happy confident young man with a skin condition he can live with and possibly help teach others like him not to hide in there den's but embrace their difference."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

Ichthyosis Awareness Month: Brenna and Courtney's story. "Asking about someone’s appearance is a lot like asking someone how much money is in their bank account."

Brenna and Courtney Westlake wrote for last year's Ichthyosis Awareness Month Blog Project. Brenna is two now - and she's grown so much. She wears glasses now (so cute!) and is progressing with her feeding. Courtney is learning a lot about the social aspects of Ichthyosis - her post for this years IAM blog project is testament to that.

I'm really glad Courtney wrote this post. I feel like I'm forever battling with people trying to convince them that it's not ok to ask someone about their appearance. When I was in NYC I had a particularly rude woman interrupt me to ask whether I had laser treatment or was sunburn. I shut her down politely. She ended the exchange by telling me I should be glad someone is even talking to me!

On recalling the story, people asked whether the woman was really being rude, or did she mean well?, or even whether I should have used this situation as an education opportunity? I've experienced enough questions and comments to discern what's rude and what warrants a detailed reply. As for the educational opportunity - I just want to get on with my day, you know. I educate where I can - more so here - but I'm not obliged to in real time. Questions and comments are tiring, and very intrusive. I think it's very easy to dismiss rudeness and acceptance of intrusive questions when one is not experienced in being asked them.

You can follow Brenna's progress and Courtney's reflections here. Brenna has Harlequin Ichthyosis.

Say hi to Brenna and Courtney again!

"It took me many months, but I finally realized what Carly meant when she has written many times about how personal it is to ask someone about why they look the way they do.

My daughter Brenna was born in December 2011 with Harlequin Ichthyosis - a different form of ichthyosis than Carly’s, but very similar in appearance – and most questions that have come my way about Brenna’s skin have been kind and caring. But after a cashier at Babies R Us last year practically shrieked, incredulously, “did your baby get SUNBURNED?!”, I was indignant and defensive.

I realized that asking about someone’s appearance is a lot like asking someone how much money is in their bank account.

It may be no big deal. Just as some people may be very comfortable with the ‘total’ line on their checkbook, someone might be completely nonchalant about discussing their visual difference.

However, it’s a very personal question, and it could be offensive.

It might embarrass that person, or there may be a long and upsetting story behind the answer.

And the bottom line is that it doesn’t matter. Just as you shouldn’t treat anyone less kind because of how much money they have, your reaction to someone who looks “different” should be the same to someone who doesn’t have physical differences.

Because, as I’ve learned in nearly 2.5 years with Brenna, “different” is actually not so different after all.

You may first notice Brenna’s deep red coloring or her dry skin flaking off as she plays…but once you realize that her appearance doesn’t matter, you’ll simply see a child enjoying life with her brother and her parents.

You’ll see a child who loves animals and pizza, who can’t get enough of her pacifier, and who begs for book after book. A toddler who throws fits when she doesn’t get what she wants and who will jump at the chance to go for a walk in her stroller any time.

And I would guess that once you stop paying attention to her skin, you’ll realize she’s not so different from your own children."

 

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

26 May 2014

Ichthyosis Awareness Month: Kallie, Jane and Kati's story. "We don't know anybody that is alive that has skin like me. I am extra extra extra special."

One of the best things about my stay in New Orleans was meeting Kallie, her Mum Kati and her grandmother who Kallie calls Gane. They made a two and a half hour trip to see me, and it was a lovely afternoon.

Kallie is a sweet little girl. She and I played Tic Tac Toe (she's better at it than me!), we ate lunch and beignets (or 'begnets' as I pronounced them with my Aussie accent!) and then she and her mum bought tutus (well, Kati put on the tutu Kallie chose for her sister). So cute! People on the street complimented Kallie and Kati on their bright choice of frills. I regret not buying a tutu...

You might remember Kallie's story from last year's Ichthyosis Awareness Month Blog Project. Kallie has a combination of Lamellar Ichthyosis on her face, arms and legs. and Congenital Ichthyosis form Erythroderma (CIE) on her chest and back. She's five now - it's her birthday today! Happy birthday Kallie!

Meeting Kallie makes sharing part two of her story even more special. She has such a beautiful spirit and is very well mannered. She loves purple and wearing pretty dresses (me too!) and is a Disney fan. She's learning to speak Spanish at school. She also loves horse riding and proudly told me that she fed the horses the night before we met. And she's very pretty. Reading Gane's perspective of being a grandmother to Kallie made me smile and get a lump in my throat. The adults who stare at this beautiful girl having fun are heartless. She's a little ray of sunshine and I hope people see that more than they see her skin.

Kallie, Katie and Gane are very close - it was great to see them all talk and be silly together. Gane is her granddaughters' full time babysitter. I could see Kallie adores her, it made me think of the time I didn't spend with my own grandmother when I was a little girl.

I know Kallie, Kati and Gane will be my friends for life. I do love how we rare people can come together like this.

"Kallie is an extraordinary little girl living an amazingly ordinary life in the skin she is in. Her biggest concern of the day is what she wants for her birthday and who she wants to be for Halloween. Oh how I wish it could stay that way.

Kallie will be 5 years old the end of May, and she is growing in so many ways. She has become quite independent. She likes to be dropped off at carpool and walk to her class with her big sister Kennedy Jane by her side. She is learning and thriving at school, where she is appreciated for who she is. There is a Kallie Day planned at her school by a Senior who is devoting her Senior Project to Ichthyosis.

Kallie has learned to say the word "Ichthyosis" and in her 5 year old language she says .."I have scales". Not sure whose word that is, but it works for Kallie. She readily explains that "God made me very special. We don't know anybody that is alive that has skin like me. I am extra extra extra special". And for now that is good enough.

Winter has been difficult for Kallie and a real challenge for us to keep her skin moist and comfortable. Kati (mom) is always researching and trying different approaches to keep Kallie as comfortable as possible. Occasionally, Kallie complains, but for the most part she just goes with the skin she is in.

We are all looking forward to summer and the swimming pool and trips to beach. Summer is much kinder to Kallie. She loves to swim and the salt water really helps her skin. A win win!

Kallie received a Tiny Super Hero cape and Kennedy Jane (older sister) has a Tiny Super Hero sidekick cape. They are both very proud. Kennedy Jane is 7 years old and wise far beyond her years. She steps up and protects Kallie and is her very best side kick.

During Mardi Gras Holidays, Kallie...Tiny Super Hero, Kennedy Jane, the best side kick,

Kati ( Mom), and I (Gane) went to Disney world. We had a marvelous time. Those 2 little girls are very brave and fearless. So I put on my still a kid at heart mode and rode endless roller coasters and enjoyed each bump and sharp curve. While Kallie was focused on the next big adventure people were starring at Kallie. For the life of me I can't begin to imagine what is going through a seemingly intelligent adult's mind nor what they are thinking, when they stare at Kallie. I want to say "if you knew how foolish you look you would stop staring at this very animated child who is thrilled beyond words with what ride awaits the very long line."

Because Kallie is 5 years old, she is not eye to eye with adults so most of the stares go over her head. For me it is very disturbing. As her Gane I want to protect her. But as time goes by, we won't always be there to protect her. So it is my prayer, that in the next few years we can equip Kallie with the strength and aptitude to face those stares with an understanding beyond her years. I trust that Kallie will be comfortable in her skin and the stares will bounce back with a confident smile. I hope Kallie can stand on a platform of acceptance and teach others about people with visible difference and help each of us to be comfortable in the skin we are in.

We all face challenges in accepting our weaknesses and embracing our strengths. Kallie has more than her share. My prayer for Kallie is that she lives her life to the fullest and becomes the very best Kallie. So far she is exceeding my expectations.

Lovingly

Gane"

 

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

 

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