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Telling my story of what it's like to live with Ichthyosis and a visible difference. Loving life!
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Hi Carly,
ReplyDeleteI have just stumbled upon your blog and been humbled and inspired by your approach to everything, and all of the work that you do.
I have eczema, which sometimes flares up on my face and makes me feel miserable – not only is it sore, itchy and burning, but it completely changes me from a usually-confident person who loves meeting new people to the nervous wreck I was as a young teenager.
I now know how lucky I am, and how amazing you are. You've reminded me that no matter how bad your skin feels, a big smile on your face becomes the focus and makes all the difference. So now, when my skin is at its worst, I will think of you and smile, and not try to hide behind my hands (which is what I usually do).
Thank you for the incredible work that you do, and for the effect that it has had on me. I'll try to share your blog to people who I know will appreciate it.
Thank you, and good luck with everything. I really hope that that wanker of a taxi driver (or wankers of taxi drivers) realises how much of an ignorant prick he/she was, and seeks to change his/her ways!
All the best,
xx
Carly, You are amazing and you make such a difference! Take care!
ReplyDeleteHi Carly, aka WONDER WOMAN!
ReplyDeleteSuzi here from ABC Goulburn Murray, you did an interview with my colleague Joseph yesterday. Here's a blog I wrote about your blog: https://open.abc.net.au/openregions/vic-albury-wodonga-27gx6gw/posts/normal-s-just-a-setting-on-the-dryer-73fd7se
Sorry for the long URL. You write so well - and thoroughly deserve that award, and all the other ones too! Keep up the fantastic work, it's been a pleasure to explore the stories you've posted. You are a magnificent human being.
Warm regards,
Suzi (taylor.suzanne@abc.net.au)
Hi Carly
ReplyDeleteSaw an article on news.com.au and just want to wish you a happy & healthy future. With a smile as big as yours you will no doubt overcome all adversity. Go girl all the best, love your attitude on life X Jo
Thank you, I also have a rare disorder hidradenitis suppurativa. I am slowly with help from my friends and family, able to not be ashamed of myself. For years I have lacked the confidence to get out there and do more. But you have inspired me. Once again thanks. A.
ReplyDeleteWell done Carly. I believe I have met you in my local Coles supermkt. I am 61 with long white hair, often uncomfortable with social phobia. I joined the disability movement when diagnosed with schizophrenia, set up my own consultancy in mh and worked that for 10 years. Met my wife, now have a son and guess what - lost my diagnosis of schiz. Started out to help others and also helped myself - Cheers, Ross Findlay. Say hello.
ReplyDeleteWell done Carly. I believe I have met you in my local Coles supermkt. I am 61 with long white hair, often uncomfortable with social phobia. I joined the disability movement when diagnosed with schizophrenia, set up my own consultancy in mh and worked that for 10 years. Met my wife, now have a son and guess what - lost my diagnosis of schiz. Started out to help others and also helped myself - Cheers, Ross Findlay. Say hello.
ReplyDeleteI saw an article about you and your recent experience on Reddit, and decided to check out your blog. Wow! You have inspired me (and so many others by the sounds of it) and I admire all your work. Your approach to the whole Reddit situation is a lesson is patience, love and how to behave generally. Keep smiling!
ReplyDeleteHi Carly,
ReplyDeleteHave just read an article about you and we wanted to say how beautiful you are on the inside and out and how strong your reaction has been you are a star!
Have a great Christmas and keep believing in your self!
Michaela and Ellen (Oxford UK) xxx
Hi Carly,
ReplyDeleteWell I'm very impressed at your positive attitude thats what I love about you...you go girl...young lady.
You know Carly I'm a male nurse (now retired) and have never seen a condition like yours but have read about it and I've practiced around the world with the Canadian Armed Forces Medical Service and have seen many unusual skin conditions and most pain I felt was when I seen a young girl of 15 with leprosy, bless her dear soul & no direct cure then and that was in Cyprus, but here in Canada we don't see alot of the terrible conditions like yours and I hope they do & will find a cure for your condition. :-)))))
Anyways, young lady you keep being positive about it all and I find you a very beautiful young lady and I sure would also ask you on a date if I was much younger & lived near you.
So, at this time of the year (21 Dec.,2013) I do wish you a very Merry Christmas & a Happy 2014..God bless you always, and don't let those arragent negative people put you down, ok.
Have a good 2014 & I send you my love as a concerned human being, so take care.
BoB.
Hi Carly,
ReplyDeleteLet me start by saying you are an inspiration to more people than you can ever know. It takes a lot of bravery to take on the internet, no matter who you are, and you not only took on the internet but you won!
I'm a mom of a 4yo with XLI and I noticed you mentioned stress makes you skin-sore. The doctors never mentioned stress as a factor in his ich. Do I have to worry about his stress levels affecting his skin, too? We have moved away from the Eucerin and Aquafor lines for a while and are using Aveeno but personally I love my homemade hard lotion bars for his skin the best (coconut oil, shea butter and beeswax). They moisturize and keep the moisture sealed in so he doesn't dehydrate as easily.
Hi Carly,
ReplyDeleteI have seen you on the train a couple of times and came across your blog after recognising you in an article you wrote on Turia Pitt. What an inspiration you are! Keep it up!
Dear Carly.
ReplyDeleteI found your blog through your article on the Daily Dot. Before that, I didn't even know there was something called Ichthyosis. I just wanted to say that I am sitting here with tears running down my face. You're an inspiration and a role model. You make me feel stronger and better as a human being, just from seeing what you've accomplished. Thank you so much. Keep being amazing!
Vänliga hälsningar från Sverige - Warm regards from Sweden
-- an anonymous dude