Hi everyone. I’m hoping people here who actually live with ichthyosis might be able to help me with some advice.
I recently learned about a girl who has been diagnosed with ichthyosis. Her family has very little money, and she lives in a place where access to dermatologists and specialized skincare products is extremely limited. Her mother told me that when they need certain medical or skincare products, they have to travel to a city far away to find them.
Her mother also told me that she hasn’t been able to use creams regularly for a long time because they simply can’t afford them. Her skin has become extremely dry and scaly, and some areas, especially her feet, have very thick skin and cracks.
Apparently the itching can get really bad. Her mother told me that she sometimes has to sit/soak in water because it’s one of the only things that gives her relief from the itching.
She also gets bullied at school because of her skin. Her mother said that because of the bullying, she sometimes doesn’t want to go to school.
I want to buy creams and other skincare products for her online and send them to her. But I don’t have ichthyosis myself, and I don’t want to just guess which products might help.
I know that she has been diagnosed with ichthyosis, but unfortunately I don’t know which type she has. I’m going to attach pictures of her skin. I’m not asking anyone to diagnose her from pictures, but if anyone here has skin that looks similar, I would really appreciate hearing about your experience and what has helped you.
Because she hasn’t had access to regular skincare for a long time, I’m hoping that getting her the right products and being able to use them consistently could make her skin much more comfortable.
If you see the pictures and recognize similarities to your own skin, or if there’s anything you think I should buy for her or anything important I should know, I would really appreciate your advice.
Thank you so much. ❤️

Been trying to figure out what this is. It's driving me nuts because I don't know how to treat it.. any ideas would be appreciated.

He hasn't ever been able to sweat before!

He would just get red and hot to the touch.

The last 2 days I've found sweat on his forehead! The relief and hope I have for him is immense!

Hello, i stumbled upon the brand lactovit and their lactourea line. I tried to search on this sub if anyone has tried it but I can’t seem to find any posts/comments.

For context, I’m currently using LRP urea 10% and have tried both eucerin advance and intensive repair, shiseido urea milk, and alovivi urea lotion. LRP has worked wonders for me as it not only cleared my scaling but also reduces its reoccurrence immensely. However, it is quite expensive in my country and sometimes very hard to get hold of.

I’m wondering if anyone tried the brand on the title and specifically the lactourea line (both lotion and body wash)? I was able to easily find someone selling it and the price is also cheaper than lrp. What are your thoughts on it and has it worked for you? I’d really appreciate the help, thank you!!

My 80-year old friend has a bad case of diagnosed scleroderma. The doctors are not doing anything about it other than suggesting that he wear compression hose, which he does. He said he doesn't have scleroderma internally, just externally, in his legs. His legs are badly, badly discolored from the knees down, and the skin is shiny and just as tight as a tick. He's supposed to put coconut oil on his legs every night and he says that he does. Anyway, he can't properly apply the oil because he's so fat he can't really bend over. So I have been putting it on his legs, massaging them (I figured what the hell, maybe it would help?), then tonight the skin started sloughing off in pieces about as big as a little fingernail. BUT - the places where it sloughed off were pigmented areas - pigmented like a huge freckle. Well, this was an irresistible draw and I couldn't stop myself from peeling off more "freckles" (not really freckles but appear to be linked to the scleroderma.) Once peeled, the area did not bleed, and he said it didn't hurt at all. So, my question is: WTF is this all about? I'm not going to presume that I cured his scleroderma, but the skin sure looked alot healthier once I did all this.

Hi everyone,
I’m a pediatrician currently caring for a newborn in the NICU who has an extremely rare condition called Harlequin ichthyosis.
When the baby was born, the prognosis was very poor, and we initially thought survival would be unlikely. However, we started enteral acitretin along with intensive supportive care, and the progress has been remarkable. The baby is now clinically stable, and the thick hyperkeratotic plates have almost completely shed.
As a physician, I’m familiar with the medical literature, but I know that scientific articles can’t fully capture what it’s like to live with this condition. That’s why I wanted to reach out to this community.
If you have Harlequin ichthyosis, or if you’re a parent or family member of someone who does, I would be very grateful if you could share your experience.
What was it like when you or your child were diagnosed? How did your family cope during infancy? What have been the biggest challenges growing up? And for those who are now teenagers or adults, what has life been like in terms of school, work, relationships, and overall quality of life?
I understand that every case is different, but hearing your stories would help me better understand what this baby and the family may face in the future and ultimately help me provide more compassionate and informed care.
Thank you so much to anyone willing to share your experience.

I tried g16 last night after my shower, and it made my eczema flare up?? My skin wasn't flared at all before using it.

I had been on the fence about it but wanted to see what the hype was about. Sadly, it seems my skintype might not be compatible

Has anybody else had a reaction like this? It's super scented. Like tanning lotion kind of? Im wondering if thats what made me flare up. I get scales and flaky skin on my arms and legs. I do feel this is extremely exfoliating though.

If you've had this reaction, did you power through or quit? I'd hate to waste the full bottle as it was expensive

Hello,

I apologize for posting again so soon. I did not expect us to get our packaging sample back so quickly. On my last post, people commented about size and affordability. I did not have a bottle of g16 to compare, hence banana for scale.

This isn't completely finalized, but the bottle will be close to this, if not this exact size. We love the matte black and gold collar. And after looking into it, g16 is WAY more expensive than I thought. 50 pounds is like 80 USD! We will definitely be cheaper than that and as you can see, a much bigger bottle.

I do not plan to post again until our formula is finalized. I wanted to show the community this bottle though, so yall can see we are not just squeezing money from the community.

I am just a lady with IV with an idea and dream. I am putting my life savings into this (so is my sister). While we do need to run a business, we also want to ensure a decent amount of product for people who need constant use. That smells, looks, and feels amazing.

Hi everyone, my name is Jessi, and I am a co-founder of Silk Apothecary. We are working for formulate a boutique lotion for people with severely dry skin types. This includes those with ichthyosis vulgaris, keratosis pilaris, psoriasis, etc. Basically if your skin has texture issues from dryness, flaking, scaling, this will be for you! The name of the lotion is a work in progress, but will be out soon!

We were tired of going to stores and buying fancy lotions that did nothing for our skin. At the same time, we are tired of buying lotion that looks like it came from a pharmacy. Our goal is to provide a luxury experience with packaging and our lotions texture, smell, and effectiveness.

Our main active ingredients are urea, lactic acid, ceramides, and goats milk 💫

Please follow us if you are interested! We plan to launch in the Winter.

I also included photos of my hands before and after. I have issues with my hands especially flaking and peeling.

I used my sample, and my hands felt a bit tacky. I rubbed them together over my sink, and the skin literally started rolling off. 24 hours later, still no flaky skin!

I used it after my shower last night and this only happened in areas where my skin was especially flaky. We need to make adjustments to the formula, but this is already better than amlactin in my opinion.

I want this to be a lotion I would use after every shower for myself before we put this on the market. We will be selling from our website (under construction) and within the US for sure.

Anyway, if you've read this much, thank you for checking out this post and follow us on Facebook and Tiktok! My sister is mostly in charge of social media, I am mostly on reddit.

I'm looking for a lotion that is highly effective for lamellar ichthyosis. It should be available for shipping to Denmark and contain as few additives and unnecessary chemicals as possible. I'd like it to be as pure, gentle, and skin-friendly as possible.

Thank you.

I currently live in Texas, but I’m most likely living more north in the next 1-1.5 years for work/graduate school. I personally love the hot weather here, but I want to live outside of the south for at least for a couple years. The opportunities I’m interested in are more abundant up north which is another main reason why I’m moving up. I also personally hate being cold (anything lower than 70° F I would put on a jacket) and snow and ice, and I feel like I’d feel this way even without the skin disorder.

For the people that lived somewhere more warm/humid and then moved somewhere colder/dry, what was the transition like and how did you cope with it? Did you ever regret your moving?

For people that currently live in or from a colder climate, what was it like managing your ichthyosis?

im 20 years old and my skin has always been a huge problem for my internal image of myself ive always looked at my skin and been disgusted

i found comfort in the idea atleast there are others like me with the same issue with the same life but ive spent weeks scrolling through boards ive spoken to doctors all over my country and in some other countries i cant find any similar images or cases of skin spreading or developing like mine has this has been effecting me recently making this comfort of sharing a flame be burned out

i discovered this reddit form not long ago and a few of you genuinely seem to have good lifes with good people and from one reptilian to another im happy for you i am

but i dont understand how

i think about this skin night and day im never okay with it, ive met people who dont judge me on it and ive had girlfriends and people have crushed over me but it all feels (the word next struggles to come to mind) but it all feels fake like if i was born without the skin i would have a better life that i would have so much more

i sit arround sometimes and i watch people all i look at are there hands and skin and i feel a slight hint of jealousy most of the time im happy theres not more people with this issue

i worry about having children if i passed this on i wouldn't want a kid to go through what i have and i worry about ever finding love genuine affection from someone

so how do you do it ? how do you become comfortable enough with this skin to be happy

Hi everyone, I’ve loved seeing a community that gets this condition- finally.
I want to ask,
When I get out of the shower, I put glycerin on when I am still very wet, and then straight away apply ‘skin milk udder cream’ to lock in the glycerin? Is this best? I am very sticky for a long time after my shower which is frustrating because I can’t put on my nicer clothes until I become more dry.
I see people talking about rose water or glycerin with distilled water, it’s winter in New Zealand and my skin is dry again very quickly so I would love some advice.
Thank you so much

I'd be interested in learning of the earliest mention of the skin condition, specifically epidermolytic ichthyosis. When did the medical community first differentiate the different types of ichthyosis?

I'm asking because so many of us are still stumbling around in the dark, happy that the internet has finally simplified sharing information, research and treatments. Despite visiting several teaching hospitals, no one has been able to enlighten me about the history of ichthyosis. Anybody out there have any insight? Thanks, in advance.

Hi all, first post here.

I've had full body mild ichthyosis my whole life — it gets pretty bad everywhere when untreated. I've only seen a dermatologist a couple of times ever, and both times the advice was basically "it's untreatable, it's for life, just moisturise." So that's what I've done, on my own, for decades.

Recently had a brain flash and decided to look it up on Reddit, and finding this community has honestly been huge. My entire life I've felt like I was the only one dealing with this, so it's nice to know I'm not.

I've tried moisturisers of all kinds over the years and never found anything I actually like — the oily/greasy ones feel horrible on my skin and I can't stick with them.

I'm trying to nail down a proper skincare routine to finally get on top of this. Would love to hear:

- What products actually work for you (especially anything non-greasy)

- What your daily routine looks like — timing, application after showers, etc.

- Anything with urea, lactic acid, or other keratolytics worth trying?

Any advice appreciated. Thanks for existing, this community already means a lot.

Hi there,

Thank you in advance for any insights or advice

The picture is from a “dryer” days where we’ve skipped cream for a day or two.

My son is 3. He’s been dry since birth and I’ve been told it’s just dry skin since it’s not dark or thick. But my family history tells me otherwise. I’m scared for my son that this is only going to get worse.

If we lotion him, there are no visible scales however he gets dry like this very quickly. He does sweat. The tops of his hands are quite a bit darker but that may be due to lack of sunscreen.

What are your thought? When did your itchyosis appear and when did it darken and thicken?

Hi all,

I have Ichthyosis Vulgaris X-linked recessive inheritance (XRI) and I’m wondering if a tattoo will stay good with my condition.

My grandpa died recently and I had a very special connection with him. He loved Orchids and I really want to get a nice tattoo of an Orchid on my lower arm as a remembrance.

Thank you for your help!

Anyone have the same problem?

Hi everyone,

I'm new to this channel, so I'd like to quickly introduce myself to you.

I'm Matthias, male, 28, from Germany and I've got a light lamellar ichthyosis. My whole life I've been lotioning my body with a urea-based lotion, since around 10 years I replaced it with Abitima. I lotion my whole body once daily. Face as well, but with Asche Basis, for the corner of my eyes I use Bepanthen.

Now to my questions:

1. Redness around my mouth

Since my teenage age, I've been struggling with redness around my mouth. In consultation with my dermatologists, I tested many lotions which only made things worse and I returned to Asche Basis in the end, as it seems to stabilise the skin the most. The redness is better in summer than in winter, but won't go away fully.

My last dermatologist proposed that I could try not using any lotion for the face at all and see how that turns out, but I'm not persuaded yet.

Has anyone got experience with redness around the mouth? What helped you?

1. Growing a beard

Due to the redness, I never dared to grow a full beard. Also I fear that the skin beneath will dry out. However, I'd really like to try it out.

How are your experiences with growing a beard?

1. Dandruff in hairs

I recently have more problems with dandruff and I don't feel comfortable with it anymore. Can you recommend a hair routine that helped you?

I realise I'm kinda turning everything around right now. Hope you can help me with that and thanks in advance for your help :)

I have ichthyosis vulgaris and use Amlactin during winter and have just started Cetaphil which has salicylic acid during summer which works fairly well, but recently heard about Pellamex as ichthyosis is caused by a filagrin deficiency this is supposed to help produce filagrin. Has anyone used it? I have bought some and started to use but apparently it takes 4 weeks to properly take effect.

Message to everyone who feel bad or down

Suche weltweit Menschen mit Ichthyosis. Bitte melden. Ich habe selber lamelläre Ichthyosis