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.)
“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.”
“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.”
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.”
“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!
“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. :)”
“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!)
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 ❤️😘”
I LOVE THIS!
“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.”
“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 😁
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:
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.