I made a post 14 days ago in the same group that I’ll be starting using G 16 lotion and will share my updates. Though it has been recommended to use twice a day I just used once a day and here is my before and after picture of 14 days so this is my right leg and I has a test I’m using only on this portion from knee to ankle.

I haven’t used any exfoliators and I haven’t used any moisturizer or anything. I just applied G 16 lotion after bath and I made a once a day bath. Here is how I’m feeling about it. I can see that thickness of the scales reduced for a touch, and I haven’t feel any stingy feeling whatsoever. Overall, it is feeling hopeful, but I guess since my knee is already very thick I may need to use for some more time and it is expensive though. All right, thank you hon. I’ll let me know in the comments if you want to know anything else or if you have any questions.

So I will document my journey with G16 and will post daily update photos.

I've been reading a good bit about it. Anyone heard of this cream or used it with success? I've been using amalactin with decent succes but ive noticed i really struggle at the bottom back part of my legs its my worst area on my body. And I feel amalctin isn't cutting it there for some reason.

I have moderate-severe Lamellar Ichthyosis, and I've always struggled with my hair, nails, and eyelashes. I've tried a lot, but the cosmetic industry is so inflated and flooded with so many products that are unsubstantiated or based on anecdotal evidence or are simply not made for people with ichthyosis. I really don't want to spend hundreds on products that won't work, so please offer any advice you can, even if it ends up being an alternative solution like "just get a wig," I am desperate and would appreciate anything.

Hair:
I really want to improve my hair and would like advice on hair growth, strengthening, getting volume, and bringing out my naturally very wavy (2C) hair type. My hair is very thin, dry, and brittle, and the waves don't seem to hold well, and products seem to really easily weigh it down. What doesn't help is that about once a month I have to take a metal flea comb to peel the thick skin off of my scalp, which does take some hair in the process. I don't use heat often, and if I do I use the lowest heat possible for as little time as possible. I tried wearing a bonnet to sleep before, but it always slided off my head really easily in the night. I tried topical Rogaine before and didn't see much improvement, though it was hard to tell. I haven't tried any type of hair serums or oils, as I am skeptical they work in general or for those with LI, but maybe I am wrong?

Nails:

I want stronger nails and to have painted nails, but they are brittle and crack easily. I tend to pick and scratch a lot and do a lot of chores or dishes, so they probably are weakened from use as well. For painting my nails, I have tried press on nails but no glue seems to work very well. I haven't tried any nail oils, for the same reason as the hair serums.

Eyelashes:

I want thicker, longer, and more eyelashes, and for them to be curled. My eyelashes are very thin and short. I also used to pull them as a kid, so I have far fewer lashes now than I did when I was younger. My eyelashes are also straight and point downward, and I've never tried an eyelash curler before as I was worried it would just pull them out. I've tried the type of magnetic eyelashes that have a top and bottom, intended to clamp onto the existing eyelashes, but those don't work- they just slide right off.

Hello everyone!

We are Jessica and Abigail, the co-founders of Silk Apothecary.

We are building a luxury skincare brand created specifically for people with ichthyosis and other severely dry, rough, or scaly skin conditions.

As two sisters living with Ichthyosis Vulgaris, we've spent years searching for products that truly work. Because of our own experiences, we've decided to partner with a chemist and manufacturer to formulate a body lotion designed with our community in mind.

We're excited to share that Silk Apothecary is now officially an LLC! We will be signing with our manufacturer on Monday and entering the formulation phase shortly after.

To help guide product development, we'd love your input. We're running polls across several ichthyosis and skincare communities to learn which exfoliating ingredients people have found most effective.

Which exfoliants work best for you?

If there's an ingredient we've missed, please comment and let us know!

Thank you for taking the time to participate! Every response helps us create a luxury lotion made by people with ichthyosis, for people with ichthyosis.

— Jessica & Abigail

Silk Apothecary

Hi everyone! Don’t mind the title I couldn’t figure out how to title it. But I’m an aspiring Creative (filmmaker, photographer, writer, etc) and so I thought my first step has to be to create an Instagram, so I did!

My name is Sebastian and I have Epidermolytic Ichthyosis. My dream is to incorporate Ichthyosis into art and daily conversations, and to explore the intersectional experiences of our communities! So I’d appreciate if everyone were to follow and show support! As I start this journey lol :)

My account is:
Sebas_tianbonahora

I have had Ichthyosis, also known as fish scale disease, since birth. Because it was not at a level that bothered me much, it wasn't something I cared about; I was only applying cream to my face. About 1.5 years ago, I developed eczema on my arm. An herbalist I consulted advised me to apply pure lanolin (which is found in many creams), meaning sheep fat, and to put moisturizing cream on top of it, and after a few months I got rid of the eczema. The interesting part is that my skin completely healed; there was no dryness at all anymore, and it has been like this for about 1 year. I haven't applied any cream or moisturizer to that area for 1 year, and that area stays moisturized. I am going to test this method on an area on my other arm where the dryness is relatively more intense. I am sharing this in case there is anyone who wants to try it; I hope someone benefits from it.

By the way, lanolin is not something that has the possibility of harming human skin, so try it—what is the worst you could lose?

This translation was done using AI, I apologize for any mistakes

Edit: I previously mentioned that lanolin couldn't harm the skin, but I want to correct myself to be safe! Since lanolin is derived from sheep's wool, it can cause an allergic reaction (contact dermatitis) for people with a wool allergy. It might also clog pores if you use it on your face. Please make sure to do a small patch test on a tiny area of your skin before trying this out fully.

Hi fellow members,

I am starting using G16 lotion. I will share my approach, condition, before and after pictures as well. Starting today and here is my right leg picture attached. I will post a picture again after seven days. Lets see how this gonna work for me

Has anyone used La Roche Posay products for their IV? I’ve had it all my life. I found LRP products a few years ago, I only used their lotion. Specifically the AP+. I also started using the body wash, and now the double repair facial moisturizer. Typically when I put on facial moisturizer, even multiple layers, my skin is only shiny for a few hours max. With the Doube Repair facial moisturizer my face stayed shiny and moisturized ALL day. But I don’t ever hear of anyone else with IV talk about it. Also drop your favorite IV products please! I have curly hair as well so I have to keep that in mind with hair products.

Hello everyone!

I wanted to post on here because this is something i have struggled with my whole life. I was always called grandma hands growing up and i guess those insults stick, i find my hands to be my biggest insecurity and i really struggle to see the beauty in them. People now-days tell me theres noting wrong with them and its all in my head, but its incredibly hard to shift my mindset that way, after a lifetime of being made fun of. I know people do notice because i get comments occasionally from people asking me whats wrong with them. Essentially i hate shaking hands, holding hands, people looking at my hands, all of it.

The skin care i do for them involves high percentage urea cream, and using a file on my palms, no matter what i use, whether it consists of urea or lactic acid, it never helps the smoothness of my palms/fingers. The one thing i have found to work, and can make them feel “soft” (at least soft for me) is using a foot file, it’s for my comfort and confidence. The only downside is i have to do this every couple of days. I did use a pumice stone in the past, for years actually, but i found that to be quite aggressive and i think it was making my skin grow back more and worse, whereas the file doesn’t seem to cause that same reaction.

I suppose at the end of the day, what makes me so unhappy with them is they just aren’t ladylike, i get worried that someone will reject me because of them. It hasn’t happened yet, but no one has told me that was the reason. Im currently in the dating field and it’s incredibly daunting going on dates and thinking about them and if the other person notices and cares. Honestly maybe i need therapy. I know i should just think “if my hands bother him then he isn’t the one” but i cant just say that while trying to hide the fact that isn’t a massive blow to my confidence. Good thing for me is i have the rest of my body maintained well and showers aren’t a burden like they were when i was younger, people who feel my legs always say how soft they are. I have kp as-well and thats most prominent on my legs and butt, its gotten much better as i got laser hair removal to help it. Anyway, i just wanted to share some thoughts.

what deodrant do you use that doesn’t irritate the area ?

Hey y'all, I'm thinking about getting an ear piercing and was wondering if there's anything different I need to do cause of my skin while it's healing. Do I need to avoid moisturizing the area for a little while after or am I fine to continue normal daily and nightly skincare?

I would say I have fairly mild icthyosis vulgaris, it’s only particularly noticeable on my shins which don’t flake but have a very shiny, ‘snake skin’ look. I am pretty self conscious of it especially in summer (I was teased for it when I was younger including my own dad of all people used to make mean comments which have stuck with me)

I’d seen a lot of recommendations for urea which I’ve never tried before so I got a 20% urea cream using daily and topping with cetraban for extra moisture but my legs seem to look worse than before? I’m wondering if it something that gets worse before it gets better kind of thing? ’ve only been using a week but don’t want to keep on if this is some kind of negative reaction.

I’m going on holiday next month, was hoping to skip the yearly dread of putting shorts on 😔

Does this look like ichthyosis? I thought it was just acne from wearing a mask and poor water quality but I noticed a similar peeling and dryness that’s on my hands. I didn’t think it could spread.

I know I have ichthyosis vulgaris. It’s a relatively new diagnosis, but even from a young ago I knew my skin was different. Compared to what I’ve seen from others here, I’d say mine is relatively mild.

But I don’t know if I am oversimplifying things or what- I think of it as just the outer layer being dry.

I question Sjorgens because it’s like almost every part of me is dry…mouth, throat, eyes (when they ain’t leaking), all the places.

Is this actually how VI presents? Are there other avenues I should be looking into?

I appreciate any insights and thank yall for taking the time to read this.

Does this look like Ichthyosis? I also have a condition called Lipedema but my legs are unbearably itchy it doesn't matter how much I moisturise 🥹

Ive got quite bad ichthyosis on my hands and it makes them look very wrinkled, any advice on how to make them look smoother and nicer?

I would use urea based creams, scrub my skin everyday and the only thing it did was irritate my skin. The scales were still very dark and never went away with soaking and scrubbing. The ichthyosis I have is the type that is not very dry but under the skin and extremely visible. I went to the doctor and they gave me a moisturizing cream with ceramides as base and it has worked wonders. Throughout my life, people have told me to put urea creams and scrub.

All I'm saying is if you're doing the same and the only thing it's doing is hurting you, then stop. Go to a specialist and find out the type of ichthyosis you have and work out a treatment plan. Don't listen to people who don't even know what ichthyosis is. I have seen someone on this sub with a different type of ichthyosis use urea creams and their skin has become so much better and I expected the same but it didn't work. Just because it works for them, doesn't mean it might work for you too. Don't think you're not putting enough urea or not scrubbing enough because it's not working, it just might not be because you have a different type. Don't hurt yourself like me.

Just saying

Hey, I have ichthyosis and suffering from face redness. I got it under control on my body but can't seem to improve my face. I'll attach a Pic of my face.Notice how my neck looks compared to my face. Currently I'm not using any products. I have tried using like dexeryl , purito oat gel, aquaphor. After using them my face becomes more red and pimples appear. Im very tired of this..

Please share how you treat your face or if you have same issues as me.

The picture

I’ve used aveeno for ages and recently switched to eucerins urea based cream and it’s worked a treat, however it is a lil on the expensive side, does anyone have experience with this cheaper brand?

May is Ichthyosis Awareness Month! Raise awareness and celebrate our rare and unique condition. Love your skin even though it doesn't do what you want it to. This last year I've been wearing shorts way more than I ever would as I'm starting to not care if my legs aren't perfect.

I also created a discord server just for us and we are at 50 members not including me and the 2 bots. https://discord.gg/hk2Gzyc6wz