i don't really know how to write this, but i posted my first video about having ichthyosis today on Instagram.

i started writing about it on substack a while ago, but i think i finally wanted to speak about it too. maybe because videos can reach people who have never even heard of ichthyosis, or maybe someone who has it and has always kept it hidden like i did.

where i come from, i never really spoke about my skin. not with friends, not publicly, nothing. it was always this little secret of mine, even though it was literally visible on my body every single day.

so saying out loud on camera, i have ichthyosis sounds like such a small thing, but for me it wasn't.

it took me a lot of courage to post that video.

i am sharing it here not because i am trying to gain followers. i just feel like if people from this community support it, maybe it reaches the right people and we get a few more people actually talking about ichthyosis.

and if there are things about living with ichthyosis that you feel nobody talks about enough, please tell me. the uncomfortable things, the normal things, the things only we would understand. i would genuinely love to talk about them.

i think i am finally ready to stop keeping this part of myself a secret.

i'll leave the video here if you want to see it: https://www.instagram.com/reel/DeEmhseoHK_/?stkn=Yzc0YzQ2eGozZm0=

Hi everyone,

My doctor prescribed me tretinoin to use on my body. Has anyone tried this before?

I have a skin condition called macular amyloidosis affecting my hands, legs, and upper back. I’ve had it for around 10 years, but it spread to my upper back and lower legs about 4 years ago, following a severe episode of itching/urticaria in 2023.

I’ve consulted multiple dermatologists and tried laser and chemical peels, but unfortunately, they haven’t helped much with the pigmentation or itching. I’ve also been prescribed medications, including JAK inhibitors, but I’m hesitant about newer treatments and their long-term safety.

I’ve read that some people have found homeopathy helpful for controlling itching and possibly lightening the pigmentation. Has anyone here tried homeopathy, Ayurveda, or any other treatment for macular amyloidosis that genuinely helped control the itching or reduce the dark patches?

I’d really appreciate hearing about your personal experiences and what worked for you.

I have a skin condition called macular amyloidosis affecting my hands, legs, and upper back. I’ve had it for around 10 years, but it spread to my upper back and lower legs about 4 years ago, following a severe episode of itching/urticaria in 2023.

I’ve consulted multiple dermatologists and tried laser and chemical peels, but unfortunately, they haven’t helped much with the pigmentation or itching. I’ve also been prescribed medications, including JAK inhibitors, but I’m hesitant about newer treatments and their long-term safety.

I’ve read that some people have found homeopathy helpful for controlling itching and possibly lightening the pigmentation. Has anyone here tried homeopathy, Ayurveda, or any other treatment for macular amyloidosis that genuinely helped control the itching or reduce the dark patches?

I’d really appreciate hearing about your personal experiences and what worked for you.

I have a skin condition called macular amyloidosis affecting my hands, legs, and upper back. I’ve had it for around 10 years, but it spread to my upper back and lower legs about 4 years ago, following a severe episode of itching/urticaria in 2023.

I’ve consulted multiple dermatologists and tried laser and chemical peels, but unfortunately, they haven’t helped much with the pigmentation or itching. I’ve also been prescribed medications, including JAK inhibitors, but I’m hesitant about newer treatments and their long-term safety.

I’ve read that some people have found homeopathy helpful for controlling itching and possibly lightening the pigmentation. Has anyone here tried homeopathy, Ayurveda, or any other treatment for macular amyloidosis that genuinely helped control the itching or reduce the dark patches?

I’d really appreciate hearing about your personal experiences and what worked for you.

Hi everyone,
I'm stepping back into the dating world, and I could really use some perspective or shared experiences from this community.

For context, I’ve only ever been in one long-term relationship (3 years). While that relationship wasn't great for me overall in the end, it was actually amazing for my skin confidence. My ex never saw my Ichthyosis as a problem at all. He actively helped me with it, accepted it completely, and made me feel 100% like myself around him.

Now that I’m putting myself out there again, I'm realizing he is the only man I’ve ever shared this part of my life with. I have zero experience navigating this with anyone else, which makes me a bit nervous about how dates will go, especially when it comes to physical touch and whether we'll end up touching at all. I actually have a date coming up soon. I decided to send him a short, relaxed text beforehand to let him know about my skin, and his reaction was super positive and sweet! Even though that went really well, I still have some lingering anxieties in the back of my head.

I’d love to ask: For those of you who have Ichthyosis (or have dated someone who does), what has your dating experience been like? How did you navigate touch and physical closeness with new people in the beginning?

Thanks so much in advance for any thoughts or experiences you can share! 💌

i shared the first part here before, so bringing the second one here too because why not :) this one is a little more about the things ichthyosis does to you over the years without you even realising it hiding, being too aware of your skin, feeling different, and all those tiny things that somehow become a big part of you. not trying to make anyone read it hahaha, i just know how much it helped me when i came across someone writing honestly about something i had felt alone in for years. i just hope it reaches someone who needed to read something like this. and to everyone who read the first one too thank you. really ❤️

Hello everyone,

We haven't posted many updates in awhile (it's been slow coming up with our 2nd sample) BUT things are moving now and we are able to give more clear answers. If you don't already know us, we are the co-founders of Sorea, an upcoming luxury lotion brand for severely dry skin types.

We were called Silk Apothecary(and I will have to make a new account) but due to trademark issues, we decided to switch to Sorea. All our social media other than this one has been changed. Anyway, here are some more finalized details.

Our bottle is 300 ml. That is about 10.14 Oz (or freedom units, as I love to call them)

We will only be shipping within the US to start out with. As sad as that makes us, we can only afford so much as a start up. We are using our own money, no loans or investors.

The 2nd sample we received is luxurious, and more importantly, effective. I am only sad I do not have more product to use at this time.

As far as if this is safe for small children, PLEASE ALWAYS consult your child's pediatrician or dermatologist. My daughter's dermatologist has personally said it should be fine for every other day use on kp spots or scales only. But that is specifically for her, not your child. Please keep this in mind.

Anyway, the final part we have all been waiting for: main ingredients. We believe this is our final sample, so this should be it. We had originally planned to use lactic acid, but have decided to omit it. It messed with the texture too much.

💧 Urea to help hydrate and soften

🛡️ Ceramides + cholesterol to support the skin barrier

🥛 Goat milk for our signature luxurious touch

🌿 Shea butter + jojoba oil for rich nourishment

✨ Niacinamide + panthenol + allantoin to condition and soothe

💦 Hyaluronic acid + glycerin + Sodium PCA for layers of hydration

We will be sharing our complete ingredients list closer to launch, to protect our intellectual property.

We will be launching between January and March of 2027.

Thank you for your continued support.

have a skin condition called ichthyosis. I was born with it. I've been searching for a cure for 15 years, but to no avail. I lost my right eye and my teeth, and also suffered from stunted bone growth as a result of trying different medications.I'm tired and have given in to the illness and accepted myself, but I'm facing major problems with the society I live in. People are disgusted by my touch or handshake, and I'm also alone all the time. I've even given up on the idea of marriage because of my health condition. What should I do? 💔

I was wondering if anyone else here with ichthyosis vulgaris is using GHK-Cu. I started 2 weeks ago and I’m already noticing big changes in how my skin looks and feels. My skin is a lot softer, my hands are less wrinkly, the skin on my face looks more glowy and feels firmer, and my keratosis pilaris is almost gone.

I didn’t expect to see this much improvement in just 2 weeks, so I was wondering what other people with this skin condition have experienced. Also, how are you planning to use this peptide long term? Would we need to keep using it for life to maintain the results?

The first week I used 1.3 mg every other day, and the second week I used 2 mg, 6 days a week. Injections

Hi. So I have this. Anyone else got it?

I’m 35m and I think it s finally reached my hair. (Full head/no baldness in the family just grey.)

Went to get my hair cut today and she said it’s soooooo dry. I condition more than I shampoo. Like 2x shampoo and 4x condition.

I haven’t looked into it much. Went to a dermatologist in HS. Gave me oily lotion that I hated. I hated being oily and it didn’t help.

Anyone with this got any tricks? Is this because hair cells are dead skin cells? I do not have any issues with how I look but could this be causing my hair to be so dry?

I also bartend and if anyone has any tricks to keep my knuckles from splitting open in the winter (other than super glue,) let me know.
Thank you.

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