What is ichthyosis?

I have a lifelong skin genetic skin condition called ichthyosis form erythroderma. It means scaly red skin. I was born with it and it will probably never be cured. When I was 10 years old, I was diagnosed with another variation of ichthyosis called Netherton's Syndrome. For me Netherton's Syndrome is not much different to the variant of ichthyosis I was born with, except I now know that it affects my hair.

Here is some information from the ichthyosis website. You can read more about ichthyosis there, too.

Ichthyosis (ick-thee-o-ses) is the name of a rare genetic skin disorder. Since it's a genetic mutation, it isn't contagious--you can't "catch" it. Ichthyosis causes the skin to build up and scale, causing it to be extremely dry, among other problems.

Most types of ichthyosis are present at birth, and are life-long. Currently, there is no cure, only treatments.

I am red and scaly. My skin gets itchy and sore. My face is the reddest part of my body because it is exposed to the elements. I get infections easily - generally on my legs, but sometimes on my face. Sometimes my infections result in hospital stays where I am bandaged up like a mummy. Infections can make me very sore.

My skin condition affects lots of other things in my body. My eyes, ears, digestive system, temperature and metabolism are all affected to a degree. I see lots of doctors!

While it is medically challenging, the social challenges can be even more difficult. I am stared at, commented on and teased every day. I try to deal with peoples' questions and rudeness the best way I can, with a smile and a polite answer (most of the time). Sometimes all I can do is laugh at the stupidity of some people!

I hope this blog educates you about ichthyosis and the challenges of living with a chronic illness.

If you have any questions, please ask.

Please visit my Ichthyosis and appearance diversity resources page for more useful links that may help you!

You can help to raise money for Netherton's Syndrome research here - this cause is run by Jack Oldacres' family and friends.


 

38 comments:

  1. I'm sure you get this All THE TIME but you are an inspiration, not only to others living with Ichthyosis but also to readers of your blog in general.
    The way you provide a voice with your positive yet entertaining writing is amazing and I am honestly so inspired by your willingess to love your life in a bubbly, outgoing way despite the discomfort you endure. That in itself is very moving. It would probably be so easy to isolate yourself into a shell.

    You seem like such a nice person. I wish I had more friends like you. Keep smiling girl! :D

    Oooooh I'm the first to comment, how exciting! :P

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  2. Hi there Carly,

    I was really happy to stumble on your blog. It's great. Life is hard and great and too short and sometimes painful, and you are great to reach out to others who may be feeling isolated. Well done you.

    I know that I'm so fortunate in my husband, children and friends. I try and reach out to others who may be feeling low or isolated. If we are all more inclusive, it gets more of us smiling!!

    Cheers.

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  3. I love your attitude about all this! You seem to be handling the cards you have been dealt with grace and class. I have eczema myself and while it is not as severe, it has been spreading to my face more and more. As a teacher, who has people looking at her all day long, it can be hard to deal with. Sometimes I get so frustrated and want to hide out at home. I am so impressed with you and your attitude! You are an inspiration!

    The Auspicious Life

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  4. Both my mother and sister have ichthyosis, so I have a better-than-average understanding of the difficulties you are going through. Hats off to you and your bravery and press on in what you are doing.

    It may not impress you, but check out 'Sleep Talking Man' if you're looking for a pick-me-up (pardon some of the language), it always works for me. :)

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  5. Hi Carly,

    I have Ichthyosis Nethertans type also and looking through your various blogs inspired me. I feel so similar to you without even knowing you personally. I think it's great to use something as most people would see negative to your advantage. I hope I can do the same because at least then we can feel content about having this disease. It happens for a reason, and I can tell you were chosen to help others along the way. Keep it up, and if you ever feel like talking to someone who knows EXACTLY what you are going through, feel free to write me back or anything. I don't see many people with the same type of Ichtyosis as me unfortunately.

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  6. I just jumped on over here via Busichic cos I was curious, and I think I've met you... and then I read this entry, which was very interesting and inspirational... coincidentally, I've just finished reading a book where the heroine had ichthyosis (The Crimson Petal and the White)!
    Hope to bump into you again in the near future, visit if you like at http://stylewilderness.blogspot.com/

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  7. Hi Carly!

    Thank you for visiting my blog! I decided to check yours out as well. I just wanted to say you're so incredble! I can tell immedately that you give joy to yourself and you bring joy to others. No pity party for you. You're very matter of fact without feeling sorry for yourself, and that's a wonderful thing. I was diganosed with Cebreal Palsy (which affects the muscles in your body) at 2 after a brain hemmerage. I know what you mean about the stares and the social challenges. Sometimes people can be too nosy at best, and downright rude at their worst. With me, I'll have a completely normal conversation with someone while I'm sitting down, then when I stand up and start to walk, I'll get the "Why do you walk like that?" question sometimes. Once, while I was walking my dog, I even had a complete stanger ask me if I was able to have sex. You just roll your eyes and go about your day, and keep a good attiude, which is what you seem to be doing daily! :)

    I'll be checking out your blog often, I'm hooked. Enjoy your weekend! :)
    ~Katie

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  8. Hello,

    I have been looking at a lot of information on Nethertons Syndrome as 2 years ago my daughter was born 4 weeks preemie by emergency csection.
    She spent 10 days in special care and was diagnosed with Ichthoyis.
    When she was 4 weeks old she passed away, we found out 14 months later ( yes 14 months) that she passed away because her lungs had collapsed because she had pneumonia, due to having Nethertons Syndrome.
    It is amazing to see someone else in Australia that has the condition as I have been following a lot of case studies in the UK and hadn’t found anything in Australia.
    I would love to talk to you more but must admit I don’t have a lot to do with blogs, though I have saved the address of your blog so I can check how you are going 
    My email address is blairalycejones@live.com if you would like to contact me at all.

    Thanks so much for your time 

    Blair Jones

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  9. Hey Carly,
    Congratulations on what you are doing here. You should be very proud. I cant believe how much courage you have shown your whole life and how absolutely sad and stupid some of these people you have talked about in your blog are.
    You know that you have done more in your life than those idiots ever will,
    cheers,
    Tania

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  10. Hi there, I love your site, you ar every insiprational. I have a six year old boy who was diagnosed last year with netherton's syndrome. I would love some advice on if there is anything I could do to make his life journey easier. Feel free to contact me at 'octavia (at) occipocci.com'.

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  11. Hi Carly, just stumbled along your blog and I have to say that I just LOVE your attitude to life - you're so positive and brave and a huge role model to women everywhere to live their dreams.

    Can't wait to see what you do next,

    xx Denise DT

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  12. You are amazing. That is all..

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  13. Hi Carly!

    I stumbled across your blog and all I can say is that you are a very strong person and I wish you all the best! Be proud of who you are, and don't pay attention to some negative comments you might hear sometimes. People should learn from you! You're BEAUTIFUL and SMILING!!!! Congratulations for everything you do and keep on doing it!

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  14. Hi Carly. I came to your blog through Faux Fuschia but was very interested to read your comments about Ichthyosis. My husband has it and I can relate to all you say. What he was told, and perhaps there are different versions, is that only men can get it and the women in the family carry it. So our daughter, if she has a son, has a 50% chance of the son being born with it. My husband finds it is much better in humid conditions - a good reason to move north as it is not very humid in Melbourne!!!!! So I didn't know women could get this too and know through my husband what you go through. You have my commiserations but as you say there is no cure so you just have to do what you can. Well done on educating people on this condition as it can be hard to live with and most people have never heard of it.

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    Replies
    1. I believe your husband would have x-linked ichthyosis which impacts males only. Females are carriers. I'd love to chat more as my son will be born next month with x-linked ichthyosis. It so difficult to find other Australians with th condition, especially in Melbourne.
      PS your daughter has a 50% chance of being a carrier therefore may not pass it on at all. Fingers crossed!

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  15. That you are teased daily is a testament to just how poorly evolved we are as apes. People are terrible people. I'd like to hope your blog work goes some way to raising awareness. Maybe it won't help the idiot on the street who will always tease you, but it will help people like me raise my voice more stridently in silencing those who would seek to tease people with a disability. As someone who is actively involved with paralympic athletes, I see this kind of frankly mind-melting bigotry and stupidity happening daily. As someone who is an outspoken critic of anyone who opposes societal equality, I have become a rather loud, rather rude, rather scary voice in my community when it comes to making sure that those who would choose to mock a person for a disability are quickly shuffled back into the deck and given a lesson in how best to, you know, not be a total dickhead. Keep opening eyes and ears with your vibrant writing and your ability to inspire. :)

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  16. Hi Carly,

    I just found your blog after reading the profile piece on Blogchicks. Here's cheers to 2012 being your year! (and hopefully mine). I'm fairly new to the blogging space but it's so inspiring to see women who are succeeding within it and sharing their stories. Thank you for your honesty. :)

    Kat

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  17. Hi Carly,

    You used to catch the train at the same station as me, and I remember how lovely and friendly you were to everyone.

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  18. Hi Carly,

    I came across here from The Australian Woman's Bloggers Directory and have spent ages skipping around various posts from you. Fascinating reading all around.You are a very inspirational lady and a great writer to boot. Thanks.

    Cheers
    Joy

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  19. Hi Carly,
    I am listening to you on 666 ABC radio and am absolutely stunned and disheartened to hear how you have been treated by the general public. I often marvel at people who think they have a right to comment on another person's appearance. I'm sorry that you have to endure such bias. My wish for society is that people develop maturity, compassion and a curiosity for learning about others and how they live. Unfortunately it often takes people living with 'difference' to show others another way of viewing the world. Thank you for sharing your story.

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  20. I am Very inspired by your blog (: i also have ichthyosis and was born with it all over my body, but luckily i only have it on my hands and feet and in other areas not so visual to the eye these days i feel very fortunate. I agree it is superbly difficult at times.

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  21. I have met Carly on her visit to the UK. She knocked on my door one morning, looking to find 2 famous bears, but thats another story. She caught me on the with an unusual request( for me anyway.
    It took a nano second to see past Carly's disability. I saw a bubbly lady with a warm personality.

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  23. Thanks Carly for sharing your story.
    Carolyn

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  24. Hi Carly - so lovely to "meet" you and thanks for leaving a comment on MrsSabbatical. I saw your piece in The Age and it stayed with me, and now here we are!

    off to read more on your blog, hope to chat soon....emily x

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  25. Hi Carly, WOW, I am shocked that you, or anyone, would get teased! I'm deeply sorry that you have to endure that. Thank you for providing an understanding of what it is like for YOU. Hopefully those teasing neanderthals stumble across your great page and great works. :)

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  26. Hi Carly, what an inspiration you are. True beauty comes from within the heart. You sound like a truly beautiful person. I loved your interview with Paul De Gelder!

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  27. Hi Carly! I happened upon your blog from pinterest. I have 3 boys that all have varying degrees of ichthyosis. My oldest being the worst. He started high school last year and it was the worst year of him having to deal with this. Their ichthyosis is genetic, I believe x chromosome. So it is passed through girls only to boys they give birth to. Other boys in my family, including my dad also have it. He(my dad) was heart broken when he realized it was the same thing he grew up with. His was never diagnosed growing up. I know no one else with ichthyosis besides my family. Your blog is inspiring and happy you are educating people on humanity and compassion. Thank you!! A mom of 3

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  28. Hi Carly, good on you for telling the cabbie to f... off! Quite rightly. I am 60 tomorrow and have had facial eczema since the age of one. People do stare, I've even had people ask if I have been burnt in a fire. I admire that you bravely confront the world as I find it difficult to leave the house when my face is at its' worst. Keep up your fabulous attitude.

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  29. Carly: I have ichthyosis, too. But I must be a mild version - had it all my life and seemingly my kids have not followed suit. My case has been manageable, luckily. Since I don't walk in your shoes, it's hard for me to offer support other than please know that some of us are out here cheering for you. God Speed.

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  30. People can be so cruel!! I have just read your article though Mumamia..thankyou for standing up to these ridiculous people xx

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  31. Keep up the awesome! You are truly an inspiration!

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  32. YOU ARE AMAZING! I have learned something new today and a heartfelt Happy Birthday and keep up the good work coming from Maryland!

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  33. Hi, Carly! I don't even know how I came across your blog -- I was Googling something, I don't even remember what it was, when I saw your photo and read your caption about conquering the internet with AWESOME. Well, as much awesome as you have, may God bless you with even more awesome. I SO hope that you have a year (the rest of your life, ideally) free of infection, pain, and all that horribleness that goes with ichthyosis. (I even said a prayer for you as much, for what it was worth!) Hugs from Pennsylvania. : )

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  34. love your blog! i have severe eczema, its has ups and downs, some of the bad times is when it is flared up on my face, then i go red intensley drya nd scaley no matter how much cream i put on and then evenutally it all sheds off, i feel ya for the numerous infections and such like, ive got crazy food allergies/ environment. even tho it affcets my confidence, ive not let it affect my life. im married 2 kids im a community trainer and ive took teh stance that if someone doesnt like me/ judges me cos of appearence well they aint worth knowing :)

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  35. I had never even heard of your condition. I saw a picture of you on another site and couldn't fight my curiosity and had to find out what the deal was. Honestly, at first glance, your picture caught me by surprise, because you do look different from the norm, but after finding out more about you and looking at your picture a few more times, I don't find you to be at all off putting. Please don't mistake others' curiosity for cruelty. I'm sure it's hard to deal with the stares, but maybe some people are like me; maybe they've never seen anyone like you and just want to find out more. I don't pretend to understand how you must feel, but I do hope that you find the happiness in life that you seek. Good luck with everything.

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  36. just stumbled along your blog and I have to say that I just LOVE your attitude to life - you're so positive and brave and a huge role model to women everywhere to live their dreams.

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