31 May 2016

9 Instagram stars who have Ichthyosis. (And please consider buying me a drink!)

9 Instagram stars who have Ichthyosis

A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with others who know what you go through, isn't it? And Instagram is a good platform to use when you're not feeling great - as it just requires a thumb for scrolling, and some emojis if you're not really up to typing a lot! Also, taking selfies and sharing photos can be great for the self esteem of people with chronic illness and disabilities. What's not to love?!

I've found some great people who have Ichthyosis on Instagram - and I LOVE seeing their adventures in pictures.

As a part of Ichthyosis awareness month, I contacted them to ask if I can showcase their instagram. They all said yes! Here they are in their own words. They are so interesting and smart and I love them all. And they are all BEAUTIFUL. Go show them some love. (And I'm on Instagram -@carlyfindlay.)

@Clonecollector

 

"I suffer from a lot of other illnesses and currently just diagnosed with elhers danlos syndrome. Quite interesting because I don't see Ichthyosis Vulgaris and elhers danlos syndrome cases.

I'm from LA, but I have family in in Alabama also on my fathers side. I love going to the beach and it's become harder and harder due to photosensitivity and other medical conditions. I used to play tennis competitively until I could no longer.

My last diagnosis waselhers danlos syndrome, which has been invading my life in the physical, effecting my mobility. I plan on advocating Medical marijuana and cultivate my organic hair and skin raw line.

I've been taking care of my skin and hair needs due to deficiencies with my own remedies that I can't wait to finally share this year. I have very neglectful parents and I was on an 8 year quest after leaving the radiology dept on medical leave to find out what was goin on. I have a rather large medical web of things going on from lupus to dysautonomia to ichthyosis. I finally got diagnosed after several doctors had seen me all of my life, in May 2014."

@2PuenKtchen

"I am 27 from Germany. I'm a special education teacher. Happy, blessed christian girl from Germany. My faith keeps me strong because I know that Jesus is nothing but good. I know that he made me perfect! I am not a mistake. I am wanted.

I love my hair. They are growing since 2 years.

It's such a difference having long hair as a woman.

I love to laugh. I live to be joyful and I have so many reasons foor being joyful: I have the best family and greatest friends."

 

@Bumblebeemick

I'm Brittany - I'm 28 years old. I didn't know I had ichthyosis until I was college every dermatologist I went to said I had eczema clearly I don't lol. Since I was little, my mom made sure to tell me that I was beautiful and God made me the way he wanted to make me. She also made sure I looked in the mirror and tell myself: "I love me". And because of that I truly love myself and am grateful God chose this path for me.

I'm also a lover of fashion. I love to read & spend time with family and friends."

@Kiavvyeh

"My name is Kristin. I am in Alabama, USA where I'm a phd student in composition and rhetoric in English studies.

And... I dream of making higher education more accessible to those with disabilities. That's what my research focuses on, and how I combine advocacy with my professional work."

I love Kristin's dream!

@TinaSmith13

"I'm from Kansas. I have EHK. I was adopted by two awesome people who also adopted my bro who also has a disability.. I work a lot, mostly different photography and make-up projects. Plus a caretaker for a friend with CP. Side work Right now I'm slowly working on a documentary and YouTube project about living with ichthyosis. I do a little modeling gigs. I like to keep busy. :)"

@MissBrianna_Jane

"I am 26 years old, born and raised in Melbourne. I have congenital Ichthyosis vulgaris. I love to travel and try new things.

I work full time and study full time doing my bachelor of business major in event management. :)"

(I met Brianna in April and we could not stop talking. So great to meet her - friends for life!)

@K.Idella_

 

Kelly featured on my blog last year. She's in her 20s and lives in Missisippi. I love the confidence she exhudes. She's developed so much confidence and has been doing a lot of great things to educate people about Ichthyosis, and development her sense of style and self worth. Just recently she did her first modelling show! So proud!

"When you go from, "You're stanky." Or people not wanting to touch you because of your skin. To hearing, "You're beautiful." Or people wanting to meet me because of the awareness I've been spreading. This is the transformation of all times. Skin always been poppin'. Just have the confidence to say it. #YouCantTellMeWhatGodWontDo #SkinOnFleek ❤️๐Ÿ˜˜"

I LOVE THIS!

@RafJonathanTan

"I'm 20 by this Dec. I like playing music and listening to music, I use instagram to connect with friends. I live in Malaysia."

 

@Fiqasani

"My name is Syafiqah. I am 26 years old and im from Malaysia. I am doing online businesses, i am selling scarf and life insurance policy.

I like to explore new things in life so that I can be more adventures in the next time.

I like to buy things online too!

I like to feed stray cats - I am a cat lover. Do check my stray cats Instagram @kucingjalanannn which stands for stray cat ๐Ÿ˜

The reason I love Instagram so much is because I can see my families and friends new updates."

I adore Fiqasani's fashion!

Hope you enjoyed meeting them as much as I did.

Also, please note that before trying any treatments my friends have mentioned, talk to your doctor and psychologist. There are many variations, symptoms, appearances and seventies of Ichthyosis and what works for one person might not work for others.

❤️

This is the last post for Ichthyosis Awareness Month 2016. I hope that I have done more than raise awareness, and made you think about acceptance (of self and by others), and the media representation of the condition, and introduced you to some great people. I've got some more posts about Ichthyosis coming year round - thinking critically of course.

You can read this year's posts at:

Ecdysis. Tender soles.

Vereniging voor Ichthyosis Netwerken

How to cope with the emotional aspects of Ichthyosis - advice from people with the condition

Choosing clothes to accommodate ichthyosis

Crystal's video

Using Moo Goo cream to de-scale the scalp

When the media directs you not to google Ichthyosis (and what I'm doing to change that)

Rethinking Kindness - True Blue Hand

Ichthyosis Awareness Month 2016 - we must move past awareness raising

And catch up on the 2013, 2014 and 2015 posts.

Thank you for reading about Ichthyosis again this year - I hope we've moved past awareness.

❤️

I have a favour to ask, please.

You know, I've been blogging for quite some time. Almost seven years here! And I am really proud of what I've produced. There are some great resources here for you - scores of posts about Ichthyosis and appearance diversity that are really helpful. I know this because you tell me. You search for and share the posts, and I'm so grateful. Thank you.

Apart from the very occasional sponsored post, I don't get paid to write this blog. I spend a little money on the blog - online storage, apps, graphics and getting people to edit my posts when I'm really busy. I come home from my day job to write because I love it. There's a lot of time involved in blogging - this post took me four hours. Most posts take me up to five hours. I also manage social media and answer countless questions asking for advice about Ichthyosis and general disability issues. People ask me to help them with blogging and socials media. My blogs are used as classroom and business resources. Sometimes I am asked to edit work or give interviews. These are GREAT OPPORTUNITIES but take time and expertise.

I've been listening to a few podcasts talking about backing ourselves, and asking readers to show us they value our content by paying us what they can afford. So that's what I'm doing today.

I am thinking of setting up a Patreon (crowdfunding) account to support my blogging - so I can continue bringing you quality content, and spruce my online home up a bit. I plan to finally make this a dot com! I can keep writing but outsource the stuff I'm not good at. While I look into Patreon, I've signed up to a PayPal business account (I have an ABN and everything!).

I ask that if you value my work, if it's been useful to you in any way, if it's made you laugh or cry, and can spare a few dollars, you might consider supporting me. Think of it as buying me a drink. (It can be a cocktail, a wine, a hot chocolate or even a bottle of water!)

You can click the Paypal button below and give whatever you can afford. Or share this, tell people about my blog. I so appreciate it. Thank you.

 

 

 

 

 

 

 

 

 

 

30 May 2016

Ecdysis. Tender soles.

I was reading about how angry snakes get when they shed their skin. One animal carer said he observed a skin-shedding snake to lose most of its vision and wouldn't let anyone near him.

The process is called Ecdysis. Ecdysis is a necessary process for growth and movement, and happens to snakes, lizards, turtles and iguanas. These animals go off food, and they're very sensitive to touch during and after the shed. And I expect dinosaurs experienced ecdysis too. Imagine how angry they'd get during a shed?!

Every year and a half or so, my body undergoes a big shed, not just the daily shed. Sometimes it's fully body but usually it is limited to my feet and hands. This shed often means my skin comes off in big pieces - in the shape of my hand or foot. Ouch. (I've written about the big peel here.) My appetite is still the same, of course!

People with other types of Ichthyosis shed big prices of skin more frequently than I do. I'd rather not scrub to peel because it hurts - it thins the skin and leaves it burning. So many different variations, symptoms and treatments for this condition!

Right now my feet are shedding. It's a slow process - it's been happening for about a month. Each time I arch my foot or take a step, I am acutely aware of my skin. My feet tingle as the old skin comes away, making room for the new skin.

The old skin stretches and shrinks. It's like milk skin. Strudel pastry. Thinly rolled pizza dough, before it's been topped and baked. Though not delicious, because it's on my feet.

The new skin is initially soft and supple, but it's a long wait. By the time I lose the thick layer, the new layer is almost as hard as the old layer was.

I don't know what it's like to have skin that isn't painful or scaly. I do know that when my body is comfortable, I can't feel specific organs like I can feel my skin. I asked Adam this question - whether he can feel his skin? He said he knows his skin is present, but it doesn't feel a certain way. It just is. He said he notices his skin is there when it peels.

I feel so aware of my skin - the way it shrinks and tears, and flickers with itches. The way it cracks and bleeds and flakes. The way it stretches over my face in the morning, making me hide away from the world. I'm embarrassed at the way powders all over my work chair - screaming "Property of Carly" - and no, black wasn't the idea colour for a piece of reasonable adjustment equipment. I'm 10 times more embarrassed when it falls below me in the work bathroom, like talcum powder. And it flings all over the shower walls when I wash my body. I wipe it down so it doesn't gross others out. Skin, hey?

When I'm relaxed, my feet are curled inwards, like they're emerging from being bound. There's daintiness in them, but no beauty. They're like half peeled potatoes.

Occasionally I give them a salt bath, and then gently bandage them - breastfeeding pads below thickly applied antiseptic cream cushion my tender soles. And I am a tender soul during this ecdysis.

I wonder what I can do to speed up this shedding process - the fastest way with minimal pain and infection? Can I induce the rebirth of new skin? I have friends who are doing this feet shed voluntarily - putting bags over their feet, then waiting until smooth skin appears. But this is my life, involuntarily. I probably won't use Milky Foot or a pumice like my mum did to smooth her feet in the 80s, or a power tool. I'll just wait, in intermittent pain.

The beauty industry saying we need smooth feet - with all sorts of products on the market to buff, polish, moisturise and preen them so we can confidently wear sandals. Just as well I've mastered the art of pretty dresses, stockings, cute bunny socks and enclosed shoes, then! Fashion makes me happy when I feel like an angry dinosaur bursting out of its skin.

This post is for Ichthyosis awareness month. I realise it's way more information about the medical side of things than I usually share. For more about Ichthyosis, click here.

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.

Sam

"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!"

Katie

"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."

Nelly

"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."

Christine

"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."

Michelle

"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."

Gina

"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."

Cheryle

"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 ."

Bailey

"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!"

Jeffrey

"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)."

Abby

"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!"

Mary

"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!"

 

Kelly

"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."

Becky

"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."

Mark

"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."

Maria

"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."

Catherine

"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."

Nicole

"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."

Nicolle

"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!!"

Sarah

"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."

Lucy

"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.

 

 

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