27 May 2016

Ichthyosis Awareness Month: Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

She's doing an amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) in her country. I love the idea of a support group being run by people actually affected by the condition. And she also told me how the group, plus doctors, are focused on both the physical and emotional aspects of Ichthyosis. So important.

Meet Karin.

Karin from Vereniging voor Ichthyosis Netwerken

"Carly Findlay invited me to write a guest blog about my living with, and work for Ichthyosis.

My name is Karin Veldman, I live with my husband and two cats in Assen in Holland. I am not working anymore, but I spend some time raising ichthyosis awareness. I love knitting, and singing in a choir. I did a study in applying singing bowls for massage. I used to work in a hospital for a mental health.

I have Netherton Syndrome. I had my diagnosis at 39. Before that, I knew I had some kind of ichthyosis, but I didn’t know what form it was. I was born with the condition and I have spend a lot of time visiting doctors. One of them told me to expose myself in a museum, when I asked him if it could be Netherton Syndrome. This still makes me cry. In my younger days, I was bullied a lot, because I looked different. This is leaving scars on and under my skin. Sometimes the memories come back as if it is happening in the moment, called PTSD.

This is Lisette and Nicky.

In Holland, all people with Netherton Syndrome know each other. We were brought togetter in 2009 help a little girl, fighting for her health. Our first meeting was so special, so much emotions were shared. We heard other people tell our story…amazing. We are still meeting each other. In 2013 I wrote the website , also available in English.

Suzanne Pasmans, Dermatologist, immunologist and Professor of Paediatric Dermatology in the Erasmus Medical Center in Rotterdam is leading lady of the Netherton Expertise Center in Holland. Suzanne is pictured below.

Dr Suzanne Pasmans

This Center is doing research on the syndrome. There is a lot going on at the moment. They want to know more about our immune system. They want to know what the protein LEKTI means to our body. Where should it be working? What is missing? We all had to go to a medical photographer. Blood samples were taken. We all visited a psychologist, to talk about our experiences with the syndrome. The Netherton Expertise Team is a multi disciplinary team, they do very good work. They are working hard to raise awareness for European Expertise on Netherton Syndrome.

In December 2015 we started the Dutch patients association Vereniging voor Ichthyosis Netwerken. Now, five months later, we are proud to announce we have almost seventy members. And we are groing bigger. I strongly believe in that. My other board members voted me for president, so now I am the leading lady of this association. But we cannot do without our members. I am so aware of the importance of us doing this, it brings togetter so many people sharing the same experience. We lately had our first Meet and Greet. It was so great to meet everybody. There were a lot of stories, a lot of emotions. Our medical advisors were under the impression of what was shared. They think health care for people with Ichthyosis needs to improve!

Our goals as an association are to raise ichthyosis awareness. We want to know all about other peoples stories. We want to organise meetings, live and online. We have started a facebookgroop Vereniging voor Ichthyosis Netwerken. There is also our website. Our first Meet and Greet learned us about the importance of this. People with Ichthyosis need our support, they need medical support. Everybody deserves a good chance.

On this picture you see, from left to right, Eline (who has netherton syndrome), Eline's mother Anita and me.

Vereniging voor Ichthyosis Netwerken - Eline, Anita, Karin

On this picture you see me and my little friend Savio, and his daddy. My friend Eline was helping at the meet and Greet. She is standing at the door.

Vereniging voor Ichthyosis Netwerken - Savio, Karin

Another goal is to raise a big International Netherton Network, with our association as a solid base. We invite you, to become an international member of Vereniging voor Ichthyosis Netwerken. Togetter, we can make some difference!

This is our handmade mascotte VIN."

Vereniging voor Ichthyosis Netwerken - handmade mascot Vin

Carly, thank you for giving me a chance to write on your blog. Kind regards from Holland."

Find out more about the Dutch Patients Association on their Dutch website, their Engilsh website, the Netheton's Syndrome website, and join the Vereniging voor Ichthyosis Netwerken Facebook group.

This post is for Ichthyosis Awareness Month. Read more about Ichthyosis here.








26 May 2016

How to cope with the emotional aspects of Ichthyosis – suggested by people living with the condition.

One thing I can’t seem to find is a resource offering advice on how to cope emotionally while living with Ichthyosis. There is a lot of fundraising money for research and a big focus on raising awareness, which is GREAT, but it's hard to find any tangible ideas for children, young adults and adults to manage their condition beyond the physical. There is a lot of VITAL information about how to maintain the skin and other parts of the body, but maintaining mental health is just as important. The social reactions we receive and emotional impact of living with Ichthyosis can be wearing. This is one reason we need to move past raising awareness – to support the people actually affected. To equip us with skills to take us through our lives.

Last year at the inaugural Australian Ichthyosis Meet, the attendees workshopped some great coping strategies. Most of the suggestions were initiated by children with Ichthyosis. This is SO good – I love that this young generation can provide peer support to others living with the condition – children and adults of all ages, and with a range of conditions, and parents too. A lot of this is pretty useful life advice, whether you have Ichthyosis or not.

It makes me smile to reflect on what a fun time the attendees had – and that children and adults were equal contributors. This is the utmost demonstration of leadership.

Here is their advice - verbatim and gorgeous:

How do I respond 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.
  • Educate people about the condition
  • Raise awareness
  • By being approachable – eg – tell kids when they ask us, correct people if they assume it’s sunburn
  • Say "there’s nothing wrong with me, what’s wrong with you?"
  • Try brief explanation and walk away
  • Use a business card with information about my condition on it
  • Ignore it
  • I think "I am better than them because I don’t stare and make comments about people".
  • Ignore
  • Walk away
  • Tell a teacher
  • Be nice
  • Invite the child to play
  • Be strong and stand up tall
  • Be proud
  • Just say hello
  • Smile
  • Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly.
  • Have a happy list
  • Laugh
  • Dance
  • Have fun – jump on a trampoline and play with friends
  • Being unique
  • Have mummy cuddles
  • Playing with pets
  • Funny jokes
  • Quiet time with myself
  • Go to events like the Australian Ichthyosis Meet – make new friends
  • Watch favourite shows
  • Play video games
  • Swim
  • Appreciate a nice teacher
  • Be brave
  • Have pillow fights
  • Do arts and crafts
  • Doing thing I’m good at like netball and dancing

How can I feel good about myself when things get me down?

  • Have a laugh
  • Exercise
  • Guide of concern
  • Think about what I can influence?
  • Gym and friends
  • Gardening and cleaning
  • Being a social butterfly
  • Go shopping and buy really expensive things
  • Get on the phone and vent and vent and vent to my best friend
  • Sleep
  • Laughter
  • Going out with friends and having a good night out
  • Being around people who you know will listen and support you.
  • When I’m upset I go for a scooter ride or motorcross
  • Wash my hair – because I love my hair
  • Being positive
  • Reflect on how far we’ve come
  • Being able to communicate with people who understand
  • Knowing you’re not alone
  • Look on the bright side
  • Eat chocolate
  • Go outside and play
  • Soccer
  • Read a book
  • Coffee with friends
  • Quiet time
  • Travel to tropical places
  • Watch movies in bed
  • Watch soccer
  • Draw
  • Take time for yourself
  • Give yourself unconditional love
  • Talk to friends and family
  • Facebook – sharing and understanding
  • Know that I am not alone
  • Spending quality time with the kids – kicking the footy or playing cricket
  • Do things I enjoy
  • Look at photos of my kids
  • Play with a friend

It’s also so important to have access to a counsellor or psychologist in addition to your/your child’s dermatologist – to support the person affected by Ichthyosis and also the people caring for them. Changing Faces and YP Face It are also great resources for supporting the emotional impacts of appearance diversity.

Have you got any ideas to cope with the emotional aspects of Ichthyosis?



23 May 2016

Choosing clothes to accommodate ichthyosis.

I often get asked why I cover up so much. Am I hiding my skin condition? Am I cold when it’s really hot? Am I sure I’m not hot?!

I don’t go out of my way to hide my Ichthyosis. I am very proud of who I am. However, I do cover up to be comfortable. Wearing layers helps to protect me from the sun, the cold and from scratches and bumps I encounter from living life. Sometimes I wear sleeves that don’t quite cover all of my arms, and I end up with small cuts on them just from doing desk work!

Getting dressed can be tricky - what clothes will keep me warm, not show too much ointment and look good?! I need that trifecta. I pat myself dry before getting dressed. And I avoid silks and satins because the just get so oily from my ointment.

I love fashion, and so glad I’ve found ways to work around Ichthyosis. When I was younger, I’d avoid sleeveless dresses and short skirts. I’d avoid black tops because my skin could show up on my shoulders. I wouldn’t wear jeans much because they’d scrape.

Now I have body confidence, I wear whatever I want.

I have a base layer wardrobe - long sleeved tees and stockings/leggings. They're mostly black or charcoal grey. And then I have fun with the top layers - dresses, skirts, tops and pants.

When I'm really sore, I wear soft clothes. Pyjamas. All the time. If I have to leave the house, I wear clothes that feel like pyjamas - like silky pants or a tshirt dress (like the tshirt dress and kimono combo in the top picture). I don't wear denim when I am sore as it scratches. I also avoid stockings on super sore days - taking them off rips my skin and makes it bleed. And I try to make sure my clothes are breathable. Here's a comfy outfit!

My fave stores to buy from are Cue, Gorman, Target, St Frock, and Sussan - all of which are featured in this post. I love thrift stores too - Camille got me this dress from an opshop which is perfect.

As I've gotten older, I've also learnt to wear quality, comfortable shoes - if my feet are sore, my whole body hurts. Last year I got a foot infection from wearing cheap, poor quality shoes - the non waterproof upper and sole meant my feet got so wet. As soon as I switched to leather, my feet felt better.

I avoid silks and stains because the just get so oily. Once I wore a silky dress (I think it was polyester) and it got so oily on a car trip that I looked like I'd wet myself! I bought a new outfit!

I hate trying on clothes as my skin rubs and then I leave skin behind. Sometimes I've bought something just because I've left too much skin behind!

So that's my fashion story. You can read a little more about why I love sharing photos of my outfits here. Also, I use Coke to wash my clothes - read about that here.

Here's what others with Ichthyosis recommend. This post was born from an amazing Facebook chat - here are my friends' responses. You might recall some of them from previous Ichthyosis Awareness Month posts. They said I can republish these.


"Practicalities of fabrics, comfort, laundering and my personal preference of layering, as well as focusing on creams, comfort etc and being an older generation. Unlike many younger opinions, when carving my own style, I was still hung up on covering my skin too much, simply not liking if my skin looked dry if exposed or sticky arms/legs via creams and me sticking to things or things sticking to me if they were too exposed to having had a skin infection history especially a bad legs story as a kid, ever since then I'm careful outdoors to not overexpose my bare legs.

Each decade from my teens to my 40's has had me evolve with my relationship with clothes, practicalities and budgets etc.

My teens, I pieced music and style and was anti mainstream. In the 80's, once I went to Art college and went through a rock/hippy phase, with scarves and suit jackets, hippy tops, long skirts/tight jeans and boots. Into my 20's first at Uni I loved the fact that being into art meant I wasn't expected to be a high heels girl, so Dr Martins/monkey boots/converse trainers, leggings, jeans & dungarees (especially in the studio) with loose shirts suited me. I went through the rave era, so music again influenced my look and I kicked against girly expectations with the baggy tops, hooded tops and very bright/patterned leggings/jeans/trousers with a kind of 'well look at my bright image rather than me' kind of vibe. Budget and practicalities ruled and having to service wash my laundry for many years, the durability of clothes was and still does get considered. I have always loved denim jeans and had a denim jacket in my wardrobe each decade. I've worn flares/skin tight/bootleg/combat cargos/cropped to skinny legged/jegging leggings in all eras. And the 'ladette' era post rave suited me again for practical reasons and style again went with the clubbing era of Levi jeans with figure hugging tops with loose shirts/denim jacket or a cropped leather jacket (the few times I've worn black jacket other than a pinstriped suit jacket).

Although casual attire has always felt more comfy for me, I have used the mix of suit style jackets, formal trousers to shirts, blouses, in contrasting ways to formalise casual wear but never been a high heels gal. I wore denim shorts, printed culotte shorts and mini skirt with tights and calf laced boots during my clubbing days. This was my most sexual image of the wonderbra era of tight tops but again with the quirky edge rather than glamour femininity. With my slight figure back then I explored my identity as a young woman but didn't feel I fitted into glossy feminine role and have only really felt that with hints of it, as it wasn't within my budget or confidence to be super dressy. Even today I can wear pretty matching underwear and scrub up to looking smart and presentable. I rarely wear skirts these days and haven't got the figure of my 20's. But I feel more at ease with what I wear as there are flashes of colour, patterns, styles with jackets, shirts, chiffon tops with leggings, jeans, trousers that combine the very casual elements from my anti 'high' fashion student days (still love a good day to suit jacket with scarves to just boots & leggings with a cosy tops to smart trousers with chiffon tops or loose shirts with a cami vest, as I layer a lot & like contrast)

I don't feel the pressure to fit in as I did as much or kick against so deliberately but I do tend to choose things around what I feel also is practical with my skin and creams, as I don't like to have cream marks, skin showing on clothes if tops are too dark or fabrics too porous but I just know what suits my comfort zones. Patterns, colours and stripes have come back into my wardrobe in a less garish way of my student days but I probably mix classic with bolder in my own quirks to just ordinary days which got toned down by my 'grey phases' when I've struggled with depression at points.

I have a sometimes difficult, odd, garish, understated to overstated relationship with my image as I've tried to express and be more comfortable within and beyond my skin.

Undoubtedly being an Artist, often on a budget for my health employment restrictions at points and even when working alongside my studies, I had to put more money into my Arts materials than clothing materials and then there's the practicality and durability issues that prevail. I don't feel the need to do designer labels and often can't afford to. I only ever did trainers and jeans in this way really. I'm a bit anti fashion in that way but love seeing how others do it from magazines to 'Sex & the City' & 'Ugly Betty' TV, to being online aware of fashion labels and whose wearing what from royalty to film/music and celebs, it interests me in a visual identity way rather than I have to have or be this, that or the other.

Clothes were highly practical for me as a child and have been again during my shaky health decade of mid 30's to my 40's as operations and chronic pain meant being curled up in my pyjama, leisure and casual wear so often. Often still is at home but then I re-emerged to exploring my image again which I guess is less about fashion and more an extension of my Artistic self with my palette of clothing but with styles & fabrics influenced by my skin comfort and the practicalities of my ichthyosis.

I have an identity of my own facilitated by choosing from what us an array these days of clothing style and my wardrobe echoes all eras of styles, colours, patterns and who I have evolved to. I still have hoodies to jeans of variable styles, to leggings both plain and patterned, as well as tops and shirts etc. I layer for comfort and practicality often with vest camisole base layers through to the sleeve and leg lengths that compromise my skin confidence and wellbeing. I'm a big bargain hunter (budget has often dictated and I have bought items via charity shops, well before it became fashionable to do so!) but have bought one off good quality items of clothing/accessories to compensate.

I have had a more complicated and compromising relationship with my image and clothes and fashion than I used to think, as we all have in the Western world and the eras of our lives and who we are influenced by and self expressive.

I have my own image that is often different from my Sisters who seemed to trail blaze ahead when we were teenagers and now have more conventional styles, whereas I probably underestimate how many boundaries I pushed, to be at an age and stage more at ease within & beyond my skin. Not bad for a relatively non fashion'ista gal!"


"I just wear what I want and what feels good. I love to find fun clothes at the second-hand store and mix and match. I usually don't mind showing off my arms even if they are dry but I tend to keep my legs covered if they aren't great. I try not to let me skin dictate anything I do, so I got over not wearing black or dark colors. I think it can be a challenge to find good sweaters because they can be scratchy and dry me out. In general, I don't consciously think about my skin when I dress. I just wear what makes me happy."


"I try to stick to clothes that like wearing but I tend to wear leggings and vest underneath so that the cream does not come though the clothes as much."


"I dress very warm, but I do not like to try on clothes at stores; very self-conscious about flakes, etc, getting on items. I also have to stay away from certain kinds of materials as my flakes/skin sticks to it like static cling does and it is embarrassing. Not in recent years, but years ago I have actually ended up buying clothes I have tried on because my flakes stuck to the inside of the item, for example dress pants. I now know what kind of materials I can wear and as a rule I do not try on anything in the store; I buy, take home, try on, and return if not suitable. I do not wear sleeveless tops unless I am wearing a cozy sweater over it (not wool); and I stick to dress pants for the most part now so I can wear footless tights and wear nice warm socks; no pantyhose as it makes my feet very sore and break out. How is that for being honest but not pretty. Thanks Carly Findlay for all you do, you truly are special and have made me more open about my skin condition."


"Wearing shorts or a tank top doesn't bother me, but I am careful to pick fabrics that don't snag on my skin or rub a lot at the joints. I do tend to veer away from black shirts because they show the flakes so much, but I've never found black to be flattering for me anyway (makes me look pale) so no big loss there."


"Though I have a lot of confidence in my general appearance, if my legs and arms are too flaky I refrain from shorts and short sleeves without leggings or a long sleeved cover. Any materials that snag, rub my skin, or that are too tight on my joints are a no-go. I wear jeans most of the time or long skirts, but my favorite thing comfort wise is cotton sweat pants As far as colors go, I wear dark colors despite the fact that I flake a bit. I just brush it off.

Another thing about clothes that doesn't concern style so much as oiliness: A trick I've found that works to get the oil out of my clothing is when I put my clothes in the washer, I use regular detergent along with just a little bit of Dawn dish soap. It makes my clothes fresher and not so lotion-y."


"Just like Gina we use a squirt of allergy friendly dish liquid or my husbands truck wash in with family’s washing brings all the greasy marks off.

For a baby and child I try and pick light weight cottons. I try to steer away from thick heavy denim or cord, so that it’s not right against her skin rubbing or restricting movement. I also try and stay away from button up shirts or things with snaps at the front as she undoes them to try and scratch causing bleeds. Current fashion thin cotton play suits are perfect for this purpose. I like 3/4 sleeves and legs to try to combat the temperature especially when sitting in the pram. I can keep the liberal creams up to those bits that really dry out to try and help with itching and appearance .

I try and avoid silks and satins and silky nylon/cotton, they have this year in department stores as it oils and soaks quite quickly .

Organic Bamboo, which a lot of the eczema kids ranges and Organic Bonds are made from really irritate her and seem to make things worse.

Jr Kaftans I’m hoping are going to be our friend this summer, light weight but full length ."


"I absolutely love fashion! I've never been worried about "covering up" to hide my skin. One comment I got from an 80 year old lady who had ichthyosis was that I was the first person she met with ichthyosis and she was in awe that I would wear shorts and tank tops. I love wearing lots of different things, jeans, shorts, dresses, long skirts, short skirts, crop tops, tshirts, sweats, sneakers, flats, high heels, boots, etc. There are times I will refrain from wearing a dark colour if my skin is shedding worse than normal or if I just don't want to deal with the constant brushing it off. Sometimes the transition between winter and spring is a challenge, since it is warmer weather out but my skin is the worst it's been all year because of the dryness of winter. I am a little more self-conscious then but still don't let it stop me from wearing what I want. When I do shop for clothes, I make sure I feel the fabrics because some do stick to me or show my skin really bad. On a side note, leotards and tights have always been fine for me in dance as well. I've lived in them for 15 years now!"


"I'm not really into fashion, I just wear whatever is practical for what I'm doing. Everything from togs to swim laps, to suits as required for work or social functions. It doesn't bother me how much of my skin is on show, I don't even try to hide my ichthyosis.

Here is a photo of me at McHappy Day last year. The clothes make me feel good because the Scout uniform represents a lot of how I try to live my life and the loud footwear/socks show that I have a very cheeky side (especially when helping others)."


"I'm like Bailey and love fashion! I don't worry too much about coverage of the clothing, but I concentrate more on the fabric. My dry arms often cause the fabric to pill, similar to a sweater, which is uncomfortable and doesn't look right. I stick to soft fabrics that when I touch don't grab at my skin!"


"My primary goal is to be comfortable with the clothes that I wear. I prefer cotton next to my skin especially in the warm weather. This also helps to keep eczema to a minimum. I am comfortable with wearing dark colours as long as my skin is not too flakey. I have become more daring this year and just did not worry so much when I wore shorts. It's my skin and it is what it is... But it has taken me this long to feel this brave. And part of my increased courage is due to you Carly! Love reading your blog!"



"I don't follow the trends as I don't want to be the same as everyone. If I see something I like i'll try it on and buy it if it looks great on me. I don't think about my Ichthyosis at all. I'm addicted to shopping abroad! I wear what I want. I'm happy to wear bikinis in front of everyone when on holidays only when it's warm! I wear fitted and loose clothing depending on its weather, not because of my Ichthyosis."


"My mom would wear old clothes when she was creaming me. She did not to ruin her good clothes. My clothes always got washed separate from everyone else so the grease from the cream never ruined them. Dark colors were never worn with me living in the house because of the scales."


"I've noticed that having scale on my clothing after a big hug with Hunter is no big deal anymore. When she was little, I was highly aware of it and would often try to brush it off. That being said, and being the fashionista that I am, I never remember wearing stuff that hid her skin on me."


"My focus in clothes is comfort! I often use soft hooded sweaters, soft jeans/jeggings and sneakers. I can never wear silk - my cream is too greasy and stains the silk in no time. But I always use nylon stockings when I'm wearing a skirt or dress. Almost all my everyday clothes like t-shirts and other underwear is washed in 60 degrees - yes it will ruin them slowly but it's worth it."


"Love this topic!! Buying clothes for my 17 month old son Alfie is hard...will it be comfortable, will he be too warm/cold, is it easy to get on/off without ripping the skin, are there any bits that will cause a blister. We stick to joggers and t-shirts & jersey sweaters. No wool, no rough materials. The elastic eventually goes in trousers, I sew in drawstrings instead. Socks are an issue, they cause blisters on the ankles so we use tubifast bandages under socks. All his clothes get washed separately on a wash that steams the clothes. We wear old t-shirts or pjs when doing bath/creams. X


These are jersey joggers and sweatshirts - typical if we're at home. Then the bottom one is jersey lined jeans with elasticated waistband & drawstring (for when elastic goes!). The cardigan is knitted but is not wool - its made of cotton yarn so no loose fibres and not as hot."


"My unaffected daughters (4, 6, 9) wear one of Daddy's old t-shirts when they hold their baby brother. It protects their clothes from grease and spit-up. We also keep big t-shirts around for friends who stop by in nice clothes and want to hold the baby."


"Definitely natural fibres....and yes the embarrassment of the snow storm sometimes left behind after trying on clothes can be tragic, especially if you don't want to buy it!!"


"I aim for comfort so I'm a jeans and t-shirt kind of girl. I wore a short sleeved wedding dress after a lot of thought because I figured that all the guests knew me and didn't care, plus it looked awesome. As an adult I'm much more comfy wearing shorts etc in public but as a kid I liked to cover up more.

Nylons are a pain with blisters so I've stuck to pant suits for work."


"I have found silky fabrics are bad, every time I've had any silk or synthetic silk things then I get infections, apparently it's because the skin can't breathe. My cream affects lighter colours I won't wear white or yellow as my clothes become see through (never a good look haha). I find I have to wash my clothes in a hotter wash in order to remove the cream properly. I don't find this too much of a problem as most things are surprisingly resilient to hot washes, although I try to avoid hand wash and dry clean items."

Betty Ann

"I learned when my Carlie was little that black was not a good colour to wear. The flakes show up on the black really bad! She prefers to wear things that are loose on her tummy since she has a lot of issues with it. But she also likes to be fashionable. She doesn't mind to bear skin when it's warm enough for her to do so without freezing! The aquaphor ruins clothes and especially the elastic in clothes though."

Thank you to everyone who contributed. You can read more posts about ichthyosis here.



20 May 2016

Ichthyosis Awareness Month: Crystal's video

Today as part of Ichthyosis awareness month, I'm sharing a video from Crystal.
She talks about the difficulties of getting and keeping a job - employers discriminate because of her skin. I hope she catches a break soon.

Many people think Ichthyosis is *just* a skin condition, nowhere near a disability. But the barriers that Crystal and others face are similar to the barriers many people with a range of disabilities experience too.

Meet Crystal. I love this video.

Follow more posts about Ichthyosis here.

16 May 2016

Going to the dentist.

On Friday, I stepped out of work to do a speech at pretty exciting event. You can read about that on my Facebook. About 15 minutes before I left for the event, my tooth broke. I wasn't eating anything. It just broke after I poked it with my tongue. It was about a quarter of a tooth, the furtherest back on the right hand side of my mouth. I pride myself on my teeth, so I was pretty scared of what this breakage meant for the rest of my teeth. WERE THEY SO BRITTLE THEY WOULD ALL FALL OUT?!

After the speech, I made a booking for the dentist on Saturday. I was terrified. Terrified of the pain and the cost.

I haven't been to the dentist in years. How bad would my teeth be?, I feared.

When I lived in Albury, I went to one regularly. At school, I went to the free dental van - it was cold, and the toothpaste was grainy and not at all minty. Even when I was a young adult, I got student rates. And then I moved to Melbourne and made my dental health a low priority because of the cost. Going to the dentist is so expensive. While I get free hospital appointments, my creams and tablets are quite a signtifcant cost (particularly when I was on a lower wage/living alone), and dental appointments just seemed like another financial burden. So I put it off until a broken tooth forced me to go.

My parents always encouraged me to look after my teeth. I think I was about ten when my Dad stopped brushing my teeth - you might call that helicopter parenting, but I call that an investment in a child's teeth. My Dad, especially, was so strict with my teeth that I saw getting fillings as a failure. (I've only had one.) So I have kept to Dad's brushing regime - twice a day - though just with a regular toothbrush, and I never floss.

On Saturday morning, I headed to the dentist with trepidation. When I arrived, I filled in a new patient form, and because I indicated I was anxious about seeing the dentist, I was asked to complete another form, which was a survey about my level of anxiety. I was very scared about the needle and cost, and not so scared about anything else. The fact they were concerned about a patient's anxiety put me at ease immediately.

The dental surgery was lovely. The chairs were luxuriously soft. And Toy Story was playing on the TV screen to distract patients. The room was cleared of latex for me. And the dentist and I had a great chat. He cleaned my teeth and I had an X-ray.

It's my wisdom tooth that broke. It's not worth repairing because wisdom teeth are not necessary. So it's likely I will need them out soon. Before that, I need to see the dermatologist to discuss how this process might hurt my skin. A few friends have given me some advice - the biggest worry will be cracks in the corners of my mouth.


1. The dentist was less painful than expected.

2. It cost much less than expected.

3. My teeth are in very good condition. Other than the broken tooth, there were no cavities.

They're super clean and polished now. So white. And I went out and bought an electric toothbrush and floss.

I was so relieved about this appointment. I'd built up the fear, but it really wasn't too bad. I got this. I can do this wisdom teeth thing. Adam will need to hold my hand though.

Have you got a fear of the dentist? Did you overcome it? What did you watch on the dentist's TV?

13 May 2016

Ichthyosis Awareness: using Moo Goo cream to de-scale my scalp.

I'm a pretty private person when it comes to the actual maintenance of my skin. Not many see me washing my face or the scattering of skin flakes that cover every surface I touch. You might have noticed from photos that my scalp gets flaky, and my hair is pretty short. I wrote about my wish for long hair here, if you're interested. Most days I have to comb the scale out, and it can be annoying, but it's just a part of what I need to do to stay comfortable. Recently I discovered a breakthrough and thought it's a nice thing to post here for Ichthyosis Awareness Month.

I'm not going to show you the intricacies of a scalp comb, obviously. This tip might work for scaly, itchy scalps affected by Ichthyosis and eczema:

I had a tube of Moo Goo eczema and psoriasis cream I wasn't using on my face or body (I tend not to use products that aren't paraffin or unprescribed on my face and body because often they leave me sore). While I was in the shower, I squeezed a generous amount of cream into my hands and massaged it into my scalp and through my hair. I have curly hair so it's quite dry. I didn't wash it out. A few hours later, I combed the scale out of my scalp with a hard, fine tooth comb. I left the cream in overnight. And I washed and conditioned my hair in morning.

My hair felt great (so soft and not oily at all) and my scalp was scale free. It stayed scale free for about four days - and I repeated the process again, just to be sure it worked.

Here's my scalp after using Moo Goo cream - a few flakes in my hair but no hard scale on my scalp. And there's very little build-up at the front of my head - there's usually a lot of scale. Look mum! No scales!

Carly Findlay scalp after using MooGoo

The cream is called 'New Eczema and Psoriasis Cream - With Marshmallow, Elderberry and More.'

Remember to see your doctor before trying anything new, and check the ingredients before using this product. You can buy Moo Goo online - it ships internationally.

This product has marshmallow root extract - the website states: "the extracts could also help remove dead skin tissue", which is probably the reason my scalp looks and feels so good! I think it also contains nuts so if you or your child have got an allergy, steer clear - but Moo Goo does a nut-free cream too.

Please note - everyone's symptoms and appearance of Ichthyosis are different - even with the same diagnosis. This means, treatment results vary. What works on me might not work on you or your child.

Good luck!

This month is Ichthyoysis Awareness Month. To read other posts in the series, click here. For more information on the condition, click here.

This post is not sponsored in any way. I'm getting no kickbacks, I buy the products myself.


11 May 2016

Our wedding day: styling it beautifully.

Styling our wedding was such such a highlight. I started planning how the wedding would look pretty much the day after Adam put a ring on it. I had bought so many bridal magazines, and knew exactly what I wanted. As a blogger, I guess my profile was on my mind - how would it look on social media? That's silly hey?! In the weeks leading up to the wedding, things got pretty stressful. And I heard Meg Keene - a wedding blogger - talk to Aleisha on Save the Date podcast say "pretty is not an emotion".

The penny dropped. Focus on our promises to each other and working on a good relationship for the rest of our lives, and forget a Pinterest wedding.

It wasn't like I'd spent a lot on the styling, but I had given it a lot of thought. And after hearing that interview, I relaxed a little. What mattered is Adam and my love for each other, and that our friends and family had a great time. And they had fun. And to top off the emotions, the day DID look pretty - it really did.

I'm not great at graphic design, but I love doing events (that was my job for a long time) and I love styling clothes, so styling the wedding was an extension of that. It was really good to work with Camille - who is such a great designer and crafter. She gave a lot of her time for the wedding - I'm so thankful.

(Picture by Fresh Photography)

Just before I went overseas in 2014, I caught up with a friend in Yarraville. We strolled through boutiques and I spotted an amazing jacket. (It was Marita's, which shut down the week after my wedding.) I was frantically saving for travel and didn't think I could afford it (I think it was over $150 on sale) and my friend generously went halves with me. I never thought I'd be wearing it on my wedding day when I bought it. When I bought my wedding dress, I immediately knew I'd like to wear this jacket with the dress. (The jacket is by a UK label called Darling, it's no longer for sale in store, but there are a few on EBay. The print also came in green and coral, and there was a dress and a skirt in both colour sets which I wish I'd bought.

I was also influenced by the pinks, cornflower blues and purples at the Tuileries in Paris - the colours were quite similar to the jacket.

When it came to doing the Save the Dates, Camille and I decided to take a photo of the beautiful jacket print and use it as a feature. We decided all stationery would have this print.

The menus, table names and listing was also in this floral print.

(Picture by Camille)

The whole wedding was themed around THAT jacket. Even the clothes.

(Picture by Fresh Photography)

Quite tricky when it came to matching the bridesmaids dresses to the colours in the jacket. It was very lucky one of my bridesmaids is patient and loves fabric shopping. After the three of us visited 17 fabric shops, Camille found the perfect shantung silk in carnation pink and royal blue.

(Picture by Fresh Photography)

When I returned from photos and had drinks, I was wearing that jacket, and lots of people recognised it from the invitation.

(Picture by Camille)

I didn't want real flowers near me on the day as I really do get itchy and sneezy. And I like the thought of a bouquet that can be displayed forever. My bouquet was a mixture of silk flowers, buttons and brooches, and my bridesmaids' bouquets were white flowers with crystals scattered through. They were made by Nic's Button Buds - Nicole and her team were so lovely to work with!

I sent off my wedding invitation to Nicole in November, for the purpose of showing her the colour scheme, and the bouquets came back in February in the exact colours I wanted. It's so pretty to look at.

(Picture by Fresh Photography)

A friend asked what is in the little pink purse? It's a great #Ichthyosis hack - it's filled with a lip-balm sized tub of Vaseline and some tissues. Camille tied it to the bouquet with the ribbon from one of those horseshoe trinkets - made for easy access. This is the wedding version of reasonable adjustment. Perfect!

Even our gorgeous cake - made by Jason - carried the floral theme.

(Picture by Fresh Photography)
More about the cake in the next wedding blog post!

(Picture by Fresh Photography)

The flowers were styled by Pip Lincolne - again in pinks, blues reds and purples. I have been to a few blogging events she has styled so beautifully, and I immediately knew what I wanted - lots of flowers in lots of different shaped and sized bottles and jars. (So I collected glass vessels for about 18 months!)

(Picture by Fresh Photography)

The room was amazing - just how I planned.

(Pictures above and below by Fresh Photography)

Thank you to everyone who helped us style our wedding day. It looked beautiful. The little details were amazing. And more importantly, I stopped to remember pretty is not an emotion when it comes to styling. But "pretty" was present in our emotions - Adam and my happiness and beauty shone.

Read more wedding posts here.


09 May 2016

When the media directs you not to google Ichthyosis - and how I'm changing that.

Content warning: this post contains screen shots featuring hate speech about Ichthyosis, and examples of ableist media representation of the condition.

Sometimes I torture myself by searching for Ichthyosis on Twitter. I want to know what people are saying about the skin condition that I have. I also don’t want to know.

The Ichthyosis Twitter stream goes like this: a few tweets from Ichthyosis support charities, some people say it’s an interesting condition (like we’re here for other’s entertainment!) and link to medical journals, there are usually tabloid news stories about people with the condition, and there are a few bloggers like me adding to the conversation.

But the majority of tweets about Ichthyosis make me despair. Lots of people tweet pictures of babies with the condition, reacting like the photos are a horror film. Many discourage the searching of Ichthyosis - especially Harlequin Ichthyosis.


Last month I did a quick Twitter search and came across a tweet responding to an article The Independent newspaper created.

I scrolled up to The Independent's tweet. They’d linked to their newspaper article titled ‘9 things you should never ever search on Google according to Reddit’. (Well, referring to Reddit as a reliable source says it all, really. You know my thoughts on Reddit. Don't even search for Ichthyosis on Reddit if you've got an ounce of empathy and decency.)

The things the article suggested you don't google included: Google (duh), your medical symptoms, your favourite food (spoiler: you'll get hungry. Big deal.) and your email address. Also on the list - Harlequin Ichthyosis.

"8. Harlequin ichthyosis

It's a severe genetic disease in which, at birth, a child's skin is encased in thick white plates of skin, separated by deep cracks.

This has many complications - because there are cracks in the skin the newborns are more susceptible to infection and constant care is required to protect and moisturise the skin.

The disease used to be considered fatal, but in 2011 theArchives of Dermatology concluded:

Harlequin ichthyosis should be regarded as a severe chronic disease that is not invariably fatal. With improved neonatal care and probably the early introduction of oral retinoids, the number of survivors is increasing."

While the content is factual, isn't derogatory and doesn't even suggest the appearance of Ichthyosis is grotesque, that it's included in this list says it all.

While someone told me The Independent is not a major paper, it describes itself as "Independent, international and intelligent news coverage, from breaking stories to agenda-setting campaigns and comment.". A quick scroll through shows me it’s no Daily Mail. There is the occasional click bait story, but its front page featured stories on UK and international politics, poor work conditions, terrorism, culture and lifestyle. It seems to have some brain.

Its online readership isn't huge, but it's in the thousands per month (about the same as my blog actually!).

This article was shared on Facebook 322 times, and received over 900 likes, and 16 retweets and 12 favourites on Twitter. In the scheme of things, those numbers aren't huge. But the media has an influence, and hundreds of people have read the article.

The Independent also has a code of conduct - this part is most relevant:


We do not set out to offend the general reader or viewer and you should always consider how people will respond to our material. That is not to say that we should necessarily shy away from publication simply for fear that it might provoke a negative reaction in some quarters. Insofar as broadcast material is concerned, the Ofcom Code makes clear that: "generally accepted standards must be applied to the contents of TV…services so as to provide protection for members of the public from…harmful or offensive material." It goes on: "Broadcasters must ensure that material which may cause offence is justified by context."

Perhaps it's a personal bias, but I strongly feel this article breached that code of conduct.

When the media creates fear around something – like we’ve seen with of the media’s hype around Islam, society doesn't actually stop to get to know these people who are marginalised and vilified.

The Independent has created fear around a medical condition, a visibly different appearance. This is bullying. Fear mongering. Hate speech. This is where it starts - the mainstream media, and of course, social media.

People’s impressions of disability come from the media – dangerous, tragedy, victims, pitiful, heroes, inspiration porn, overcoming. Sometimes I think the media representation of disability impacts society more than meeting actually disabled people in real life. They're seen shows like Embarrassing Bodies and Body Bizarre - which create awareness, but in a voyeuristic, sensationalist way - and think they've been fully educated. Next!

And this is why the disability community is constantly calling for better media representation of disability. Alice Wong writes:

"When you have non-disabled people pitching, writing and editing stories about disabled, you’re missing the lived experience that’s intimately tied to accurate depictions of disability. And it’s more than a matter of hiring more disabled people in media–there’s also a need for a culture shift to examine how ableism is entrenched in the media.

Poor media representation is why people are scared by visible difference and disability - because we are presented as grotesque. This is why people feel shameful about their appearance. This is why there’s such a stigma around looking different and having a disability. No one wants to own it, because we’re warned against googling it.

I wrote about someone being scared by my face last week. Articles like The Independent's exacerbate that fear. People are discouraged from googling Ichthyosis, so it must be grotesque, right.

A couple of weeks ago, I got thinking about why I post photos of myself and share my story. The fundamental reason hasn’t really changed since I first wrote about this. Control. Control of how my story is portrayed, control of how Ichthyosis is portrayed.

I am an online writer, focusing on Ichthyosis and what it’s like to look different so I can contribute to changing the media landscape around Ichthyosis and other visible differences. I hope to show the world that people with Ichthyosis like food, fashion, can write and think critically, have meaningful and loving relationships, endure ableism and discrimination. There are many, many others doing this through blogging and socials media too – Courtney and Brenna, DeDe and Evan, Mui, Fiqasani, Maria, Hunter, Brianna, Steph, Lucy, Gina, and many many more.

When people search for Ichthyosis online, they see the condition as medicalised, the portrayal of Ichthyosis as a horror story. They don't see our full lives, our smiles and the way we are affected by ableism and medical challenges. But we collectively have the power to change that.

Everytime I post a photo of me, or write a blog, it has the potential to be misused (it's happened before). But this content also has the opportunity to change the portrayal, contributing to the library of sensitive, non sensationalised, realistic stories about Ichthyosis.

I hashtag Ichthyosis on Instagram so people can see me leading a full, happy, loved life. They see me as a bride, as a fashionista, gazing at my husband, seeing a band, eating at a restaurant, travelling. I hope they see beauty, energy and laughter. I talk about Ichthyosis on Twitter and Facebook, because it's a part of my life, a part of my identity. And I blog about Ichthyosis so that when people Google the condition - out of fear, to ridicule, to seek information, because of genuine curiosity - they won't be shocked.

When I saw that article from The Independent, I was shocked and saddened. It's a reminder that the fight never ends. As Edward Kennedy said, "There’s work to be done. The work goes on, the cause endures, the hope still lives and the dreams shall never die."

But writing this, and thinking of all the positive content created by people affected by Ichthyosis, I realise we really can help outweigh this negative portrayal of our conditions. Disability and facial difference is too often used as a target in the mainstream and social media. It's time consumers started paying more attention to the actually disabled instead of taking cues on how to react to our appearances from those who are just out to ridicule us.

I - a person with actual ichthyosis - direct you not to listen to the media. Google ichthyosis. You'll find some amazing, beautiful, smart, articulate and strong people.






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