IAMA person with a severe form of ichthyosis, often talked about on r/WTF. Pictures of my skin inside. AMA.
We are Candlesandfish and Confettiskin on a joint account created for this AMA. Two of us have a severe form of ichthyosis; Candlesandfish has written about living with ichthyosis on /r/wtf before, and the two of us on Confettiskin have also participated.
UPDATE 3:45 ET Our blog at confettiskin.com was down but is back now. Please check out our blog and links here. We'll try to backfill responses as time permits. If you get errors please refresh DNS, etc.
Kyriaki is Australian, Jennifer and Rachel live in the USA. We'll all be posting under this screenname, to make the AMA easier, with initials so you know who is who. It's night-time in Australia right now so she'll stay on until she has to go to sleep, and then Jennifer and Rachel will stay during the day.
Candlesandfish: I'm Kyriaki, and I have lamellar ichthyosis. I did a mini-AMA about Ichthyosis three months ago which you can find here. Proof that it's really me is here: http://imgur.com/n0mL8PP (and yes, there's a typo in the screenname at the bottom, my bad!), which you can compare with the photos posted here (and in that mini-AMA).
The scales shed constantly and there's a much higher skin turnover rate than a normal person, but it takes a different form where they're very thick, and only small parts come off at a time, usually pieces ranging in size between my pinkie and thumbnails. It's messy and weird and actually very painful if it's not kept incredibly well moisturised and then oils used to hold the moisture in. The stuff I used for the first 21 years of my life was about 90% paraffin and literally melted on my skin if the weather was too hot. If you don't keep it hydrated, the scales tighten together and the under layer below the skin is exposed in between the scales, and the gaps show as red skin with no protection, and it hurts like hell.
Other aspects of the condition are issues with temperature regulation (I can't sweat) and light sensitivity, as well as digestive issues.
I use heavy moisturisers and I've been on roaccutane for about a year, which has worked miracles on my skin which now looks much more normal, albeit dry. I'll probably stay on it the rest of my life now, except for when I want to have children.
Here's me with the absolute best my skin could ever look without roaccutane, taken last January, it took me several hours to get my skin to look this good - the discolouration patterning on my arms and chest is most noticeable, since I did a lot of work to make my face look normal. http://i.imgur.com/F2xL0.jpg
This is more like normal: http://i.imgur.com/HVUtX.jpg
This is in between, about a month into roaccutane, taken because I'd managed to dye myself pink with a bath bomb and it amused me - ichthyosis scales are very good at taking up colour because it's dead skin, and pink scales were funny.
Stomach (taken by me, so a bit weird) from a side angle - the pink is at the edges of the scales): http://i.imgur.com/R2Yho.jpg
And this is me now - the snake must have liked me because we're related, scaly skin and all ;) You can see the remnants of the scales on my upper chest on one side of the v-neck. http://i.imgur.com/vKylH.jpg
Finally, here's a link to a scientific (but readable) explanation of the reason that our skin does what it does - it's to do with genes being mutated, and I'm finding it really interesting having not come across it before. Lamellar is one subtype of the type they discuss in the paper, and the type discussed is rare. http://www.firstskinfoundation.org/content.cfm/Ichthyosis/Autosomal-Recessive-Congenital-Ichthyosis-ARCI-2008/page_id/700
Confettiskin: We are Rachel and Jennifer. Rachel and our three boys are all affected with a very rare form of ichthyosis called ichthyosis-en-confetti, and since last year we have been blogging on confettiskin.com. Our full bio has more details. Rachel has posted about how she sometimes has mobility problems caused by her ichthyosis (which has a picture of her foot). And yesterday she took some additional pictures for Reddit. We have also written extensively about harlequin ichthyosis
So that's us! Ask Us Anything!
Disclaimer: Rachel is a member of the Board of Directors of FIRST, the Foundation for Ichthyosis and Related Skin Types, but what she writes here on Reddit are her opinions alone and this AMA is not part of her FIRST activities.
EDIT: FRONT PAGE! YEAH! Thankyou everyone!
EDIT AT 2:24 Australian EST: K: it's been great everyone, but it's REALLY late here. So Rachel and Jennifer will be around, but I've got to get some sleep! Thanks for your wonderful questions and for getting us to the front page. You've been awesome.
EDIT 1:00 PM ET: Still working on hosting. Thanks for the Reddit Gold -- but I'd prefer that instead of that you make a donation to FIRST.
UPDATE 3:45 PM ET Our blog has been down since about 9:00 AM. Six hours later (and an additional payment) to our hosting provider, A Small Orange, we appear to be back. We are thankful that they finally got us up but will probably be doing an AskReddit seeking a new host. We're still here answering questions if you have any...
UPDATE 6:20 PM ET We've been answering new questions we notice. Kyriaki should be up soon and I'm sure she'll have stuff to add, and I (Rachel) will be back online in a few hours. Thanks to everyone for the compliments.
EDIT 10:21 ET: Hi everyone, I (Kyriaki) am up again now so I'll answer a few more questions if there are any. Thanks so much everyone for the compliments :)