Ichthyosis and pride. A bloggy break.

Photo by Rick Guidotti

As Ichthyosis Awareness Month came to a close, I thought of the stories shared on my blog and across social media - people have been courageous for starting out. There are so many variations of the condition, and so many different experiences.

Many people have not ‘come to terms’ with their condition - hiding it - and that’s ok. Others believe it hasn’t taken over their lives - that they haven’t become Ichthyosis - and that’s ok too.

But it’s also ok to see Ichthyosis as part of our identity, and to be proud to have the condition. Many disagree with me but it affords us so much: a point of difference amongst the clones, a conversation starter, the ability to think and act deeper than the superficial, a great sense of perspective and the option to be part of a supportive, connected community.

Be proud of your identity - Ichthyosis and all. Work at being proud every day. 'You get proud by practising.'

-

This is a busy week at my day job and with writing and speaking projects, plus I put in a lot of work on the blog in May. I'm taking this week off blogging. See you next week. Have fun, be safe. 

Ichthyosis Awareness Month - my story: "I've built a strong sense of resilience - both through having Ichthyosis and as an online writer."

It’s the last day in May, and that means Ichthyosis Awareness Month comes to an end. 47 blog posts were published in May - and that’s been a great feat amongst full time work, organising the meet, participating in the Emerging Writers Festival, travel, university lecturing, freelance writing and living life (and there have been some tough things to deal with in May). I don’t do things by halves! I’m tired.

While I have not been writing for my own blog this month, I’ve been collating, editing, scheduling and promoting all of these posts (with a little editing help from three people). It’s been a huge job! You can read all of the stories here - and if you’ve got time, 2013 and 2014. Who knows what 2016 will bring?!

I’ve also shared my story on some other blogs this month - readers of The Chronic Ills of Rach, Champagne Cartel and Hair Romance are now more aware of Ichthyosis.

The comments received and connections made through the month have been wonderful. Again, those who’ve written posts felt very empowered. For some, it was their first time telling their stories and this has given them confidence to continue. I am blown away by the reach of this blog project - some posts have been shared on Facebook more than 600 times!

From Mary:

"Thanks all for your comments. This post is part of an awareness for Icthyosis and it's many facets. I have a mild form, caused by a recessive gene inherited from both parents. Who knew!! However some folks have really intense skin care routines needed to stay out of hospital and/or to avoid serious complications. I follow several sites on fb and I am in awe of the courage and tenacity that some people have when facing the daily rituals that help keep them healthy. Again, thanks for reading."

Ashlee, whose son Thomas died from an infection related to Ichthyosis last year, told me May has been her favourite month because she has read so many stories from others, and because Thomas’ life was celebrated:

"I can't thank you enough for sharing our story. You are one of the most selfless, caring and loving people I know. You have such a huge heart for others and you will never know how much you mean to me. The tears just won't stop right now. That was my first time to read our story again since I sent it to you, and this week is already SO hard. We miss Thomas more than we could ever describe. We're so thankful for people like you who remember and celebrate our sweet angel. Thank you! I love you Carly."

Becky wrote to me after her story was published:

"THANK YOU THANK YOU THANK YOU for doing this. It is such a wonderful thing that you do."

Nicole, Daniel’s adoptive mum, said:

"Every day I read these and think, "That's my favorite!" And then tomorrow comes, and I get a new favorite! Thank you so much for coordinating this project."

Anita, whose child has Ichthyosis, wrote:

"We have never met Carly but I do enjoy reading and learning from your blogs yiu are doing such a fabulous job keep it up."

And people who don’t have Ichthyosis have enjoyed the posts - becoming aware of the types and severities of the condition. From Rebecca:

"Thanks for taking the time to source and share these posts Carly. I'm really enjoying the insight, the info and the personal journeys of all the people you've featured."

A friend from my hometown wrote this of Aurora’s story:

"In Australia we talk about discrimination, but we only see it a higher level, sport, politics race and religion, and yet our schools allow bullying to happen at a rate that has not changed sinc my kids were at school some 30 years ago, and in fact since I was at school some 50 years ago it is getting worse. Aurora is a beautiful young woman with a most beautiful smile, and to even consider that those of us can speak ill of someone who from the start was walking up a hill, and yet has the courage to face life with only love and empathy, where has it all gone wrong. There needs to be more stories like Aurora than Essendon."

Thank you to everyone who’s written their story, read the stories and shared them. Some people were so dedicated they shared every single post. It means so much to me and to the contributors.

Photo credit - Amy Cater

I’ve been thinking of life as a blogger and life with a visibly different appearance. And if you are a blogger with a visible difference, the exposure to comments (good and bad) increases significantly. People think they know you, that you're fair game for criticism. Fortunately when I put my blogger hat on, the supportive comments outweigh the negativity and criticism, and people genuinely see me as a whole person. The comments and stares that come my way because of my skin and blogging can be very tiring. Most times, these people don’t know me. And when it’s from within the community, it’s lateral violence.

The Australian Ichthyosis Meet was one of the best things I've done. It was a proud moment when donors got on board to support it, when the first guests arrived, when people smiled and when friendships were formed. I can't believe it happened! Despite the overwhelming positivity, it came with backlash.

While I don’t want to dwell, the criticism I received for the Australian Ichthyosis Meet cut deep. I was accused of exclusion, told I was bragging about my organisation of the event, and that I use my skin to get attention - among other things. It came from a number of people in the Ichthyosis community - their words were bitter, and it says more about them than me. We all have a choice in this world, and my choices are to be happy, to be driven, to make a difference, and not to cut others down for their success. People say we have to take the good with the bad. "You put yourself out there" is often provided as justification for me copping criticism. I do put myself out there, but it doesn’t mean it’s deserved.

I've built a strong sense of resilience - both through having Ichthyosis and as an online writer. I make like Taylor and shake it off, but I won’t lie, it can still hurt. I remind myself of this by Brene Brown:

"If you're not in the arena getting your butt kicked too, I'm not interested in your feedback.”

They're not in the arena I play in. I am not interested in their feedback, and I won’t tolerate their behaviour. The behaviour I’ve been on the receiving end of this month has ensured these people will never be involved in my life or events I organise. I’ve defended myself, my work and my reputation.

The bold contrast of admiration and criticism or discrimination is often present when you have a visible difference. I saw this On Thursday, when Mui (who has Harlequin Ichthyosis) posted a Facebook status about discrimination she faced in Hong Kong. She said a bus driver wanted her off the bus because her face made him want to vomit. That level of discrimination makes me so sad and angry. Mui (and so many others with Ichthyosis) endure these events regularly. Mui’s parents have since made a complaint to the bus service (that driver has often been sacked for similar behaviour).

And earlier that day, her story was being shared on popular women’s opinion site Hello Giggles - she’s being lauded as kind and inspirational. What a contrast. What a star. I hope Mui continues to receive praise and compliments than words of disgust. She has received so much support these past few days.

Mui’s parents said:

"Why write a book? Because of recurring ignorance like last Thursday on the minibus.”.

They told me that they’ve written a book to address the discrimination and cyberbulllying Mui regularly faces. You can read their story on their blog.

And their reason is why I blog too. I want to highlight these incidents, that happen to me and to others, as well as share the celebratory ones. I want to show you there’s a dark side to writing a blog and organising an event that helped so many others. Fortunately that dark side doesn’t present itself too often, and I will continue to be proud, build communities, provide education and make friends. And I know I won’t win everyone over - as Pip writes, I don’t need to. I have amazing people around me - near and far.

In my introduction post for the month, I wrote about creating the thing I wanted to exist. I created the first Australian Ichthyosis Meet on my own, with the help of some others. I set my mind to it and I did it. Maria said:

"I am proud of you Carly Findlay. You have managed to not only organise a successful gathering of beautiful people but the way in which you did this ensured that we walked away with friends forever. Well done Carly."

Eleanor said "It was life changing! xx" and Rebekah said "We all made new best friends for life xxooxx"

And that's what I stand for. To bring people together. To make them feel valued. I can use this blog to create positive change. And I have. I'm proud and won't be quiet about that.

If you find others pulling you down because of the way you look, or for being happy with yourself, or for being proud, or for defending yourself or for being assertive following a rude comment, ignore it. Hold your head up and continue being true to yourself. Be the better person. Ichthyosis is such a rare condition and so many people don’t experience the comments, stares and discrimination first hand. Those critics are often not in your arena. And if they are, you don’t need them.

Thank you for being a part of Ichthyosis Awareness Month 2015. It’s you I’ll focus my energy on, it’s you I’ll remember.

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.
Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Robin's story: "If you look around you can meet wonderful people."

Tonight is Robin's story - the last for Ichthyosis Awareness Month. Robin writes of life with Lamellar Ichthyosis. She has three children who are fiercely defensive of her, which makes her so proud. She also mentions the severity of Ichthyosis - last year she had an infection so severe she almost died. 

Meet Robin.

"I am forty years old, one of three daughters and the only one with lamellar Icthyosis. I have been married for 16 years now, with three children of my own, none of them have Icthyosis. I also have one grandchild who does not have it either.

I was born with lamellar Icthyosis, and until I became an adult I didn't realize how lucky I was to have wonderful insurance and health care. I had a skin graft on my eye when I was 15 that made me being different a lot worse. The graft looked great, and has lasted for 25 years. 

I have had a lot of self esteem issues, but as I grew up I found that if you look around you can meet wonderful people. 

I have lived in Iowa most of my life. I do not tolerate the heat so I spent most of summer inside. My childhood was rough, kids are very mean calling me names like dragon and snake girl.
People would ask if I was in a fire. I remember once a lady asking me when I was about 10, checking out at the store, if I had been in a fire, and I looked at my dad behind me and said yes, and that the rest of my family died. I really do not understand why people feel they have the right to ask such questions to people, especially to a child. 

My sisters were wonderful to me, for my whole life. I am so lucky to have them and their love. As I grew, my skin got better and people said they didn't really notice it, but I am not sure if that is true. The words that were said to me as a child changed me and left its mark on me forever.

I raised my children to never look down on people that are different, and they are amazing. I remember when they were like 5, 8 and 11 and someone said to them "what is wrong with your mom's skin?" and all three of them yelled and said "don't you ever talk about my mom skin! She is beautiful!" I have never been so proud of them. 

So I have used several oral medications, lotions, ointments sun therapy and injections. In my thirties my skin changed like never before and I found out I had Psoriasis. My dermatologist said that is just cruel to have to these skin conditions together. So it has been difficult treating both skin condition. Last year I got a bad infection, but didn't have insurance and waited too long, and ended up in the hospital and was told I almost died. 

With my skin, infection can get in the body easily, so after a week in the hospital I was told I will not work again, and to apply for disability. So I did, and of course was approved, and then several months later I found out that I had Socratic arthritic, so my treatment is ever changing but after joining the FIRST page I realized how lucky I am compared to others."

This post was edited by Tash. Follow her on Facebook and Twitter.

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.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Mary's story: "The relief of finding other people with similar skin is very liberating."

I met Mary around two years ago on my Facebook page. Mary has Ichthyosis Vulgaris. But at the time we chatted, I didn't know it. She was friendly, joined in on lots of discussions and offered compassion and the occasional empathy about skin pain. One day, when I was in hospital, she sent me a private message, offering gentle advice about my skin - the intravenous site to be specific. I had experienced awful pain around the cannula and Mary suggested an ice bag. I thanked her, but still  I wondered how she knew so much about Ichthyosis. And so I asked her. She told me she's in her mid 60s, a retired nurse, and she believed she might have Ichthyosis. We chatted a while longer, and soon after that, she went to the dermatologist for a diagnosis. 

I am so glad she's found a community and knows she's not alone. I'm glad to have played a small part in that. 

Meet Mary. 

"Hi, my name is Mary and I have Ichthyosis Vulgaris. I was self-diagnosed several years ago and confirmed it with the dermatologist within the last two years. My story regarding my skin and the diagnose has been one of confusion, guilt and curiosity.

I'll start with the confusion. My mom told me that two weeks after I was born my skin peeled in sheets. She was frightened and did not know what was happening. My mom was told to put mineral oil on to help keep my skin moist, but she was not given a name for the skin condition nor was she given any other advice or treatment schedule. Science had not come up with a name for my skin condition and the doctor was unfamiliar with it as well. I contracted a staph infection before leaving the hospital and my constant infections and bleeding skin kept my mom busy. The next few years were full of colds, eczema and allergic reactions.

Starting grade school was full of challenges and illnesses. My eczema was in full bloom and the elbows and knees were breaking out in angry patches of itch. A family doctor prescribed a black tar type ointment which needed to be applied and then wrapped in strips of cloth. The first day of treatment was done and I was sent off to school for the day. A huge problem ensued for me. Kids started laughing and pointing, the teacher was trying not to laugh while asking why I had such wrappings and black stuff on under the wrappings. The wrappings were falling off because they could not be taped to my skin. I was crying. It definitely was not my best day.

I went home and told my mother that I was not going to school like that again. I had been scarred by the experience. It was bad enough being coated daily with mineral oil and all the problems that went along with that. I was not going to wear rag-covered medicine again!

I found the summer heat to be so uncomfortable. Why was I always so hot when others were not. Why did I need the mineral oil even in summer? Windy days made things worse because dust and grime would cling to my oil-covered skin. Oh, and then there was the problem of eczema oozing and neighbors' pets wanting to lick the wounds. Don't get me wrong, summer was fun and I have plenty of fond memories, but I also had issues no one else in my circle seemed to have and I did not know why.

Unfortunately there was a lack of understanding within the family I grew up in. Acceptance of my skin and general health issues were difficult for some in the family. The constant cough, the flakey skin and the infections caused tension and impatience with some folks. I was called "fish scales" and told I was not clean and that was why I got skin infections so frequently, and I was lazy. I was told to stay away from certain individuals when I had a cold and shunned if I had an infection. You know that saying "What doesn't kill you makes you stronger"? Well, I am all about it :-) Fortunately I had some individuals outside the family who were nurturing and caring towards me.

So much for the confusion growing up. High school was better. I was healthier and my skin on my face was actually getting compliments on how smooth it was. Wow! But my confidence was not strong and I had a difficult time trusting or believing people when nice things were said to me. The eczema was still a big issue but instead of being made fun of people were more curious or wanting to be helpful. Life was getting better. But I still strongly disliked the heat and would still try to cover up even in the summer to hide my skin. I wore pastel colors only as it would hide the flaking scales. The guilt of being different was not going away easily, but determination and the drive to be positive definitely were strong and getting stronger.

Romance and love arrived when I met my husband. After dating for a while he said he never noticed when I had mascara on or off, let alone anything different with my skin. He just saw me and my smile. Wow :-) We married and have four children and three grandchildren. So sweet! 

When I was about forty years old I was sent to a dermatologist for another skin issue. My primary care physician said the dermatologist would also help me with my skin. Amlactin 12% was recommended and when I asked what was with my skin I was told it was just very dry. I was too busy with life to ask why and I lacked the skills to ask questions. That would change.

Enter the fabulous age of being sixty-plus, computers, and even more dry and flaking skin. Searches on the Internet brought up FIRST. It was hard for me to believe that this organization really existed. I had to keep searching to believe what I was reading. More searches brought up stories of people with skin just like me! I was so happy to finally belong! Then I found Carly and the Tune Into Radio Carly blog. So. Much. Caring.! It still took me two more years to confront my dermatologist about my skin and a diagnosis. I had put all my symptoms together and I left my skin untreated before my annual appointment. I finally had conviction that I had ichthyosis vulgaris and the courage to demand to be heard. Yes, said the dermatologist, I did in fact have IV. I told her how great it was that I know knew there were people with the same skin. I also told her how I struggled to understand my skin, allergies and asthma. Now I had an answer and I felt empowered.

The relief of finding other people with similar skin is very liberating. I am very fortunate to have caring people in my life. It has allowed me to develop important qualities such as empathy and belief in myself no matter what. I am a quiet person but I am still curious. Guilt and confusion have gone away. I wear dark colors now and don't care much if I am having a flaking moment. I would not change my experiences because they have all brought me to where I am today. 

As my son once said "Mom, your skin is just part of what makes you you." He was and is correct. Life is definitely good! Thank you for reading my story. And a huge thank you to Carly, her blog, and her caring advice."

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. 

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Atique's story: "If you to start your life over knowing what you know today, what would you change?"

Atique is 24 years old and from Pakistan and has lamellar ichthyosis. Atique's Ichthyosis has provided inspiration to study medicine - he writes about being a talented student. He hopes to research treatments for Ichthyosis.

Meet Atique.

"If you to start your life over knowing what you know today, what would you change?

A few moments after my birth, my life started to change rapidly. My physical condition became a surprise to my parents. At that time Ichthyosis was not known, especially by my parents. My parents were too much disturbed, and worried about my life and future. They went to every known doctor for my treatment. One doctor told my parents not to worry, and also satisfied them that this disease is not spreadable.

After some years my mom and dad decided to put me in nursery school. Due to my delicate physical condition, the teacher gave me extra care and attention. That was a time when I started to participate in academic curriculum. My teachers were surprised by my talent and tended to me to help me to continue my studies. They were also amazed for my devotion to studies. I also participated in every game with other pupils and performed well. The attitude of my fellow students toward me was very encouraging. In fact, they really treated me like a special person.

When I was promoted to primary school it was an occasion that made my parents and siblings proud of me on my excellent performance. I realized that God blessed me with a normal brain and a lot of attributes. I do not regret what I could not have, but I am grateful to God for what He has blessed me with. I obtained top position in every class. I got prizes for being the best student of the year many times over. The purpose of mentioning all these stories is to say thanks to God for blessing me with such talent, and saying thanks to my parents for my up-bringing, and also to all my teachers and fellow students for their care and co operation.

After passing my secondary school certificate, I decided to keep on my studies in the science disciplines. I selected biology and chemistry subjects, because biology and chemistry are the subjects that can help me to fulfill my dreams to serve mankind, and especially such patients that are looking towards scientists who may research about the treatment of their diseases. In the medical revolution there are still many diseases are unknown and we have no clue about their treatment. It needs generations to reach their depths. I decided to dedicate myself for this purpose, to work for such aims.

In university doing my BS (Bachelor of Science), I chose biochemistry as a specialization field for my next higher studies. Biochemistry is only a platform for me; through it I can research about many such types of diseases. Actually all diseases are born due to disorder in bio cycle - it may be excess or deficiency in any bio molecules. And Ichthyosis is also such a type of disease. Biochemistry plays an important role in medical chemistry. My future studies will be with biochemistry as a major field. I will research about the treatment on these type of diseases. To my dreams and ambitious I have the need to study in such institutions that are fully equipped with science laboratories, and such institutions demand high tuition fees . To get admission in such universities I need scholarship. I think FIRST can help me to get this."

This post was edited by Tash. Follow her on Facebook and Twitter.

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.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Cora and Ashlynne's story: " At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin."

I've been following Cora's blog for a while - I admire how she writes about coming to terms with her daughter Ashlynne's Confetti Ichthyosis. Life has been hard for them but they've chosen to celebrate, to work as a team - to dance in the rain, as Cora writes. The connections Cora made has ensured Ashlynne gained confidence and is comfortable in her skin - such an important trait for a 12 year old girl. And she has a mature sense of perspective, reminding her peers of what's important in life. I love their story.

You can send Cora and Ashlynne some good wishes on her Facebook page. 

Meet Cora and Ashlynne. 

"Born on January 14, 2003, Ashlynne made an impression on the world from the moment she came into it. Delivered in a small town hospital, the doctors immediately knew something was wrong with her skin, and it was something that was bigger than anything they could care for. So she took her first helicopter ride at just a few hours old, all by herself, leaving me, her mommy, all alone back in Abilene, KS with one word ringing through my head, a word that seemed totally foreign to me... Ichthyosis.

You never know how strong you can be, until being strong is your only option. Over the years there have been many times where I felt like Ichthyosis had the power to break me. But then I realized my love for my daughter was far more powerful. For the past 12 years I have had a love/hate relationship with Ichthyosis. Hating this skin disorder that my daughter is affected with, yet loving her more than I ever thought possible. Hating the baths, and the lotioning, and the scrubbing, during which she screamed the whole time, but loving the snuggles afterward, when she only wanted me. Hating all of the doctor's appointments, and physical therapy appointments, yet loving the progress I was seeing her make. I loved proving the people wrong who said that she would never walk, or never have a normal life, yet hated the fact that I even had to prove them wrong. And I always hated how much people praised me for what I did with her. I'm no martyr. I'm just a regular mom, doing what any mom would do for their child. I didn't chose it. I did what I had to do. Because I had to be strong for her. Then one day, I just let it all go. I decided I wasn't going to let the anger, and Ichthyosis run my life anymore.

See, life isn't about waiting for the storm to pass, but it is about learning to dance in the rain. And I decided to dance, with Ashlynne as my partner. We got hooked up with F.I.R.S.T., made connections with other families affected with this disorder, and it changed my perspective, which changed our life. Right before my eyes, I saw Ashlynne transform from this shy, timid little girl who hid behind me any time we were in public, to this funny, outgoing young lady with an amazing personality, and a contagious smile that just drew people to her. Now when people stare at her, rather than cower behind me, she makes a funny face at them, and makes them smile.

At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin. When you ask her about her life, she will tell you that she hates having Ichthyosis, but she loves the people she has met because of it. It has also given her a very wise perspective. She said she just wants people to understand that there is always someone out there who has bigger problems. When she hears other 12 year olds talking about their crushes, or fighting with their friends, she just wants to remind them that there are other kids out there fighting for their lives. And she said she reminds herself of that quite often when she is having a "bad skin day".

I am so proud and honored to be Ashlynne's mom. Yes, she has Ichthyosis. But Ichthyosis isn't who she is. She is beautiful, and amazing, and funny, and smart... I could go on and on. But mostly, she's just Ashlynne, one in a million, and one you will never forget!"

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.

Be social: follow me on Facebook, Twitter and Instagram.

What we learnt at the Australian Ichthyosis meet.

We learnt so much at the Australian Ichthyosis Meet. We learnt from doctors and nurses, but more importantly, from each other. I was struck by how articulate and confident the children were speaking up about what works for them and what they’d like to do next as a part of the Australian Ichthyosis community. I am mindful that we were in the safe space of a function centre at the zoo, and people revealed lots of personal things about themselves - so this is only a very small summary of what was shared.

The first session was a panel discussion featuring a panel of medical specialists: Professor Ingrid Winship (genetics), Dr David Orchard (dermatology) and Nurse Practitioner Emma King (dermatology).They talked a lot about the research that’s been done around Ichthyosis - locally and overseas. I didn’t want them to give false hope and talk ‘cures’ - but Ingrid said they were there to provide ‘hope not hype’. They want patients and parents to manage the condition on a day today basis rather than seeking along term solution. One exciting thing was mention of one blood test that will provide DNA data for many genetic tests - great for us needlephobes (it can be so tough having needles when you’ve got Ichthyosis).

The medical team also talked about minimising infection - they recommended the single use of towels (can you imagine the amount of washing?!), not double dipping into creams - spoon some out and spread it on a plate, or use gloves, before applying to the body (I’ve broken that rule two million times!) and also doing regular bleach or salt baths.

Morning tea was next, and this was a great time for attendees to talk to the medical team some more, and socialise with each other. Friendships were already forming by this time - so good to see!

After morning tea, we did a 45 minute activity, providing peer support in small groups and then with the larger group. This was just wonderful. All suggestions were valued, and when members of the small groups read out responses to the room, applause was given. I was so proud. Our facilitators did a great job if making everyone feel comfortable enough to share their experiences.   

The first question asked was 'How do you feel good about yourself when things get you down?’

Some of the responses included:

• “I wash my hair because I love my hair.”
• “I do things I enjoy.”
• “I spend time with friends”
• “I communicate with people who understand.”
• “I know I am not alone.”

Next up was 'How do you respond when to comments and stares?'

• "When people stare, I just keep walking, but if someone asks if I’m sunburnt, I just tell them I have a skin condition."
• "I smile at the person and tell them I have skin conditions and end the conversation
• “I say 'No see I was born with this skin disorder called Ichthyosis'. Also I ignore these stares. Sometimes the best thing to do is just keep going and ignore it." 
• "I give them a business card with information on it."
• "I be strong and stand up tall. Smile."

The final question was 'What advice would you give to new parents and patients?'

• "Support your child no matter what. Give then the affection/attention they need and understand there will be tough times. Make the most of your good times and shorten the bad ones."
• "Don’t chase a solution."
• "Don’t overreact."
• "Accept the situation – it becomes your normal."
• "Seek psychological help."
• "Know that it does get better." 

Nathalie from Easy Peasy Kids asked these same questions at the play table. I loved this response to comments and stares:"Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly."

To end, we talked about what attendees would like to see after the Australian Ichthyosis Meet. What is the direction of the Australian Ichthyosis Community?

It was unanimous that people want regular meets -perhaps a national meet every second year, but regional and informal activities are encouraged. We can form a committee to develop the community into a charity. And we can all keep in touch online. I am not sure how long it will take us to develop something formal (I need a rest!) but I will be sure to keep you all informed about the next steps.

And then it was off to the zoo!

One of the mums at the meet - Maria, whose story you might remember from earlier this month, sent me a piece that her nine year old daughter Claudia wrote. She wasn’t directed to write it, she just wanted to express how the meet impacted her brother (Alexander) and her family. Claudia said I could publish a part of it.

"The following day was a special one. The reason for our trip was to meet other people with a skin disorder that my brother has. Its name is Ichthyosis (Ick-the-o-ses). This is the first time anyone has ever organised an Ichthyosis conference in Australia.

On that day, we met other people like my brother, and the great thing was, that they were our age and we made lots of friends, especially Joshua and Lucia and Calista.

We got to have lunch with them and then walked around the zoo with Lucia and Joshua as well as their mums and dads. We saw lots of animals like tigers, zebras, reptiles and a bear that wouldn’t stop beating on the glass.

After the zoo visit we all went to TGIF where the sign said ‘its always Friday at TGIF’. We went with Lucia, Calista and other people from the conference. We had so much fun laughing all night.

We were so sad that we had to leave all our new friends. I would like to thank Carly Findlay for putting the conference together and it was nice to meet her."

This is beautiful. I just loved to read about the perspectives from a sibling. I am so glad everyone felt included.

People said they were so grateful this meet had fun as its focus - rather than being entirely medical based. That is something I felt strongly about. It is so important to build connections like we did on 9 May. The friendships developed were my favourite part of the day.

If you’re looking to connect patients in your community, just do it. Don’t wait, start small and change peoples’ lives. (Soon I will write a blog post about how I organised this.)

Thank you to everyone who attended, who helped out and donated money and products. I am so grateful. 

Stasia from Photo Addix took these photos. She said: "It was truly an amazing day. So many beautiful people in one room. Well done Carly I am so honored to be able to have capture it."

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.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month: Casey and Chaz's story: "We see Chaz as our one in a million and we are so lucky to have him in our life."

Last year I received an email from a dermatologist asking if he could pass on my blog to new parents of a little baby with Ichthyosis. He wrote: "I am asking firstly if you would be happy for me to direct the family to your blog. Also, your advice in managing Netherton's is likely to be more valuable than ours and it would be beneficial to have your input." I was flattered, and agreed - happy to pass on my experince to new families. 

A few weeks later, Casey (Chaz's mother) and I became Facebook friends, and the family came to the Australian Ichthyosis Meet earlier this month. It was so good to meet them! Chaz is such a cutie - so cheeky!

Tonight Casey writes of the first year of having a baby with Ichthyosis. Chaz has Netherton's Syndrome and has just turned one.

I am so glad we met - Adam and I are travelling to Ballarat to spend a day with the family soon. 

Meet Casey and Chaz.

"Hi my name is Casey in 26 years old and I live in Ballarat in Victoria. I’m married and we have a very special man named Chaz. Chaz is one and is living with Netherton’s syndrome. The first 6 months was such a rocky road with spending 6months in the Royal Children's Hospital fighting infections, high sodium and failure to thrive. We were first told by the doctors that the first 12 months will be the hardest with Chaz having to build his immune system up, so we prepared ourselves to be in and out of hospital.

Pregnancy and labour were pretty good. The first 2hr of Chaz life was spent on my chest and it’s the moment I will treasure forever. That moment of excitement, joy, unconditional love that you final have your health baby in your arms. Not knowing that anything was wrong or what road was ahead of us was not on our mind. Chaz spend the first 5days in special care unit as doctors where trying to work out what was going on with Chaz skin. Day 5 Chaz was rushed to nicu at The Royal Children’s Hospital has he was servilely dehydrated and had high sodium. Doctors run a skin and hair biopsy for NS but it come back inconclusive. 

It wasn’t until he was 5months old that we had it confirmed through a genetic research program that Chaz had NS. When signing the papers for the research we were told that they sometimes find other conditions and that’s what happened. Chaz is living with Netherton’s syndrome and Jeune syndrome. We see Chaz as our one in a million and we are so lucky to have him in our life.

Having a child with a rare skin condition has made such a stronger more confident person. I have learnt things I never thought I would have. During the journey there were many tears, smiles and doubt along the way. The hardest thing I find I have to deal with are peoples questions and finding the right words to explain it also the way people look at us (like we have let our child get sunburnt?). I know that as time goes on I will find it easier to explain. Chaz’s routine of bathing, feeding, and nappy changing takes a long time to do as he doesn’t like his creams and will often cry. 

One thing I wish I could experience was the new born smell, Chaz isn’t able to have the normal baby stuff as his skin is so sensitive. We have learnt to adapt to all of this and we don’t know any different. Since joining Facebook pages I like to support other people going through the same situation. I find it easy to talk to people that is in the similar situation. 

Chaz is such a happy cheeky little boy and I’m so glad that he is mine."

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.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Annaliese and Jossilynn's story: "Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring."

Today Annaliese shares her story of being a mum to Jossilynn - a little girl with Epidermolytic Ichthyosis. I really like how she acknowledges how hard educating people about Ichthyosis is, and that she is in a good position to educate doctors about her daughter's skin. Such an amazing advocate.  Annaliese writes that "Ichthyosis is a hard sell" - and I  get this. When you read about the severity of the condition on medical websites, it's overwhelming, but when stories like these are shared, it can make it easier to understand for new parents. 

Meet Annaliese and Jossilyn. 

"I always knew I was going to be a mom. When my sister Tasha, had her first baby Morgan I didn’t think twice. I babysat often and spent as much time with him as I could. He is 13 now and I swell with pride at his accomplishments and put on my mama bear face when he’s hurt. I was only his age now (13) when he was born, but I knew then. Most girls dream about becoming lawyers, playing sports professionally, and college. I knew I was going to be a mom.

When I found out I was pregnant with my first, it was a surprise. It was also a whirlwind. Within a year, I was pregnant, engaged, married, a mother, and then a Navy wife. Not to mention moving 3000 miles away from everything I knew. Those early years were definitely learning ones. Full of trial and error for both my husband and I. I think that’s why we’ve handled things as well as we have recently.

The week my husband was discharging from the Navy, I found out I was pregnant with number 2! A surprise, but only because we had been trying for awhile after Tristan, our son, was born to have another with no luck. So, we packed up and moved back to our little small hometown in California to prepare for our daughter. My pregnancy was normal; the birth itself was complicated with a previous emergency c-section with our son. So when I went into labor, they prepped the OR immediately.

Jossilynn was born December 22, 2012 at 12:01pm. There was a bit of panic in the room, I just saw my beautiful daughter. After that she was transferred all the way up to UC San Francisco where she was diagnosed with Epidermolytic Ichthyosis (EI). She was also diagnosed with Palmoplantar Keratoderma (PPK), which means her palms and soles are affected as well. I have told my longer story before about the early experiences, what I want to talk about is now ☺

Fast forward 2 years. Jossilynn is a sassy, opinionated, spoiled, funny, cunning, and beautiful girl. She tests my limits every single day. Her skin doesn’t blister as much as it did that first year of her life but she does have more build up now. She has nightly bathes, usually with bleach, dettol, or apple cider vinegar. After her bath she is covered in aquaphor and pajamas.

Antibiotics. Oh antibiotics. We went through a very rough year with infections. Mostly strep A type. She would be on Clyndamyacin for 2 weeks, she would be fine for two weeks, then BAM; Infection! It got so bad that I was literally begging her dermatologist to try a constant low dose antibiotic for the time being. I had done the research and read all the side effects that come along with a long term antibiotic. But, when your child is in constant pain, you do what has to be done. We started her on a low dose of amoxicillin almost 3 months ago now, and not one infection. She has been so happy.

When you find out that you’re going to be a parent, you rarely take the time to think of what could go wrong. Something like Ichthyosis, wasn’t even on my radar. I had never saw or heard the word until I seen it written on my daughter’s chart 2 days after she was born. Jossilynn’s older brother was just diagnosed with Type 1 diabetes 2 months ago. I felt like I had been stabbed in the heart twice. Diabetes is a well known disease.. You see it everywhere. With Ichthyosis, I didn’t find any real information until 2 months after we brought Jossilynn home.

Ichthyosis has become our normal, and slowly so is Diabetes. I have two special children, not special needs. They take up a lot of my time, true. Some days I want to shove my head under a pillow and scream, and I won’t deny it may have happened a time or two. I still wouldn’t change my life for anyone else’s. Every day I watch my children get bigger and I can’t slow it down. I watch my son become more independent and give himself a finger prick, I watch Jossilynn become more compassionate and care for her doll. One day they’ll be grown and I refuse to miss one aquaphor application or insulin injection!

Ichthyosis is a hard sell. When you are first diagnosed, or your child is diagnosed you’re perplexed. What in the world is Ichthyosis? If you’re reading a website definition it goes something like this; Ichthyosis is a word to describe a host of genetic skin conditions, up to 28 different types. Ichthyosis is generally made up of fish-like scaling on the body. Patients tend to have a lot of skin build up, tend to overheat due to the skin buildup, along with other complications. There is no cure. The best treatments are made up of disinfecting, creams and lotions, and temperature control.

Teaching friends, family, and even sometimes doctors about Ichthyosis can be very rewarding, but also very tiring. I would never say I am an expert on Ichthyosis, I learn more all the time. But, at a certain point it becomes like a second language. So many abbreviations, scientific words, and double meanings. Not to mention they keep changing the name of the conditions! What used to be EHK (Epidermolytic Hyperkeratosis), is now simply EI (Epidermolytic Ichthyosis).

I am my childrens’ biggest advocates. I learn more to better myself, and better their care. I can usually tell our dermatologist what needs to be done or reevaluated. Of course I always defer to her. I would never ignore the doctor’s orders, I can just tell them what I feel will be best in my experience since no one knows Jossilynn and her skin like I do.

I look at my life and I know I made the right decision even when I was 13. I was born to be a mom. I am a smart, independent, strong woman that is capable of many things but I see my life now as more rewarding than anything else I could go out and accomplish. One day when my kids are older and more independent, I will probably be bored out of my mind. I will eventually find another goal in life, but raising these beautiful special children will always be the most rewarding."

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.

Be social: follow me on Facebook, Twitter and Instagram.

Ichthyosis Awareness Month - Becky's story: "I realize that being normal is what I am."

Tonight Becky tells her story of life with Lamellar Ichthyosis. It took her a long way to come to terms with her condition - and the turning point for her was Camp Discovery. I am so glad she's stopped worrying and has made her health and happiness a priority.

Meet Becky.

"What is it like to live with ichthyosis? It is itchy.

Growing up in a small town in Wisconsin where no one knows how to care for your skin or you is a challenge in itself. To have doctors look at you and go I have no idea what to do for you or how to treat your ichthyosis. Then to go through life not knowing why you are different from everyone else. Hoping that you will someday grow out of this. And then coming to the realization that that will never happen. You start to lose hope, you start to become depressed, and you start to think nothing good will ever happen to you.

Then when you go out in public and people look at you funny, stare at you, laugh at you, or make a rude remark you wonder what is so wrong with me. What is it that is different about me? Then you remember that your skin is the only thing that is different. The thoughts start to go through your head what would it be like to not have to put all of these creams and ointments on several times a day, not have to take a 2 to 3 hour long bath every day, not to spend most of the day itching, and not have to worry about what other people are saying and doing behind your back. You start to think that it would be great to sweat like a normal person. To not have limitations on what you can or cannot do because of your skin. All of these thoughts and more have gone through my head at one point in time in my life.

Then I stopped thinking like this. Up until I was 18 I had never meet anyone else with a skin disorder. My parents were members of F.I.R.S.T. but never did any of the activities or conferences. I felt alone, lost, and out of place. I felt like no one understood me or my skin. Then I learned about Camp Discovery through the AAD (American Academy of Dermatology). After meeting the kids and adults at this camp my self-esteem, self-confidence, and respect for myself increased and became a more important part of my life. I stopped caring about what other people were doing or saying about me. I started to focus on me and making myself happy and healthy a priority.

I still have days where I will see a little kid ask their parent “what is wrong with her?” I put a smile on my face and just keep walking. I still have thoughts about what it would be like to be normal. To do anything I wanted but then I realize that being normal is what I am. Take 5 minutes and talk to that person that does not seem normal to you. You are going to find that they are just as normal as you are."

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.

Be social: follow me on Facebook, Twitter and Instagram.