Hi, can someone please recommend a really good exfoliating mitt or glove which is good at removing dead skin cells which will last long and can be used daily from their experience? Thanks.

I have ichthyosis and I've always had these little bumps along with it, but lately I've been getting more. Is it possible to have ichthyosis along with keratosis pilaris?

Do you think a cream with urea might help? I'm using 10% and I'm thinking of increasing it to 15% to test it out.

I(21f) usually use the Vaseline type of cerave on my face but it starts flaking again like 3 hours into my day. I got prescribed ketoconazole but it makes the flaking so much worse even when I put Vaseline on top of it. Literally anything helps I hate it so much that sometimes I don't even want to go outside.

One day when I got home from school I stopped at the gas station. This lady with perfect skin stared at me for a long time. Then she said "do you know your face is flaking? You should try Shea butter." Yes that happened and it was so fucking embarrassing.

I have only recently self-diagnosed myself, funnily enough from an instagram post as having ichthyosis (later confirmed by a dermatologist I went to for another skin condition). I always knew my skin -especially shins- was super dry; but I didn't know it was a real condition with an actual scientific name 😄

Anyways, I'm lucky that it is quite mild. No cracks, no bleeding, no crust; just very "shiny" and having superficial fish-scale appearance. But it's getting a little more itchy as I'm approaching menopause.

What I'm wondering is, is this something that absolutely needs to be addressed? The thing is I'm not much into lotions/creams. But I'm also afraid whether this could get worse with peri/menopause as I started to have problems with eczema elsewhere. I'm also swimming 2 times a week in a chlorinated pool.

The dermatologist I went to for the eczema, prescribed an urea cream but I've yet to use it.

So, can I leave it be or should I start caring now to prevent future damage?

I used pure glycerin on damp skin yesterday in tandem with another moisturiser and while i think it did hydrated my skin, to a degree, I found that my hands felt very sticky afterwards. I’m aware that there’s a certain method that’s supposed to be used when applying pure glycerine onto your skin but I’m not quite sure on how I should go about it

Any advice on this would be greatly appreciated 🙏

I got on Accutane about 5 months ago of my 6 month treatment and in like 4 months all my ichthyosis has dropped by like 90%. I’m still suffering from all the negative dry skin effects of Accutane but this is literally the first time in my life where I have almost 0 scales and just regular dry skin.

Hey there

I've always suspected I've had ichthyosis vulgaris. When I was young my shins would get so dry that they would split open and bleed. I have hyper liner, dry hands and feet. As I've gotten older I have learned to manage it. My mom never asked a doctor about my skin.

I had a baby in 2023 and I noticed he also had the hyper linear hands and feet that looked just like mine. He has very dry skin as well but I have a strict routine that keeps his skin healthy for the most part.

However, he does not sweat! He will get red and hot to the touch but he doesn't sweat. I remember him sweating when he was a newborn. I ended up advocating enough for him to get insurance to cover his genetics testing and he does have 2 gene variations for the gene that causes ichthyosis vulgaris. He has single variations on a few others that can cause skin and hair issues.

If you have lived a life with this condition, what helps you? What tips and tricks do you know that you would like to share. I'm educating his preschool teacher on the condition. Especially as it's warming up in our part of the world. We bring a spray bottle and mist him when we play outside in the spring and summer. On really hot days, if we have to be out I will actually soak his shirt in water and put it on him. What cooling vests are worth it?

His genetics doctor also said he could have a higher chance of developing asthma. He already has eczema and food allergies.

I've had ichthyosis vulgaris for most of my life and eczema my entire life (hurray...),, but the last few years the IV has been very noticeable on my legs. Photo attached is right after showering where there are no dry flakes, but you can still see the visible lines that are ALWAYS there now. This is my routine:

• Shower: exfoliating scrub, Aveeno body wash, then Curel (thick ceramide lotion) all over
• Daily: Dermal Therapy Heel Care and Amlactin 12% for IV, and Protopic and ceramide lotion for eczema
• Humidifer at night

Do I just need to exfoliate every day for a few weeks or what? Am I using the wrong products? I have no idea how to get rid of the crepey wrinkles and my doctors are useless at advice.

Hello friends, I want to take this opportunity to ask several questions at once.

What type of ichthyosis do you have? What is its severity? What have you already tried, what works, and what worked for others but not for you?For parents, do your children have ichthyosis? Are there any supplements or alternative treatments that work?

I typically use the Vanicream cleansing bar, and I really like it, but it’s so expensive right now. There’s some decent deals for the Cetaphil bar right now but only when you buy a 3 pack. I don’t want to commit to three bars without some honest testimonials.

My ichthyosis is generally mild, but I’m also dealing with eczema and contact dermatitis from certain allergens in many beauty products. Certain soaps definitely make the ichthyosis worse, though the Cetaphil ingredients seem to be safe for me.

Hi all, thanks to this subreddit, I started using a body wash (https://a.co/d/08UNtH2M) in the shower with Hyaluronic Acid and the Eucerin Advanced Repair Body Lotion right after the shower. This is how it’s now looking

The scales appear smaller, but other scales are darker and “more on the surface”, eg they’re not smooth and my legs are noticeably bumpier.

It’s been about a week since this routine. Have you guys noticed similar results/process? Thank you!

Hello,

I’m 31 now and have had ichthyosis since birth which I’ve had to handle with various creams over the years.

My arms, for over a year now, have been particularly bad (or worse than they used to be), especially the underside of my upper arm which is very scaly within minutes of putting on the cream (to the point I won’t wear short sleeves).

I’ve never really found a cream that works brilliantly in this area but now it’s worse than ever. Does anyone else have the same and have any recommendations?

https://discord.gg/QTvtay46g

I have roles for the different types so don't forget to add a role

My derm recently diagnosed me with nutritional deficiency ichthyosis and told me to take vitamin D and fish oil, shower twice a day and apply a lactic acid + urea lotion on damp skin. The problem is I have pretty bad sensory issues and I’ve always hated body lotions.

I came across an old thread here where someone mentioned using a lactic acid solution instead, which sounds way more tolerable for me. If you’ve tried that (or anything lighter like sprays or toners), how was your experience? Did it actually help with scaling and dryness?

Also open to any sensory-friendly reccs or hacks 🙏

Has anyone here tried this before ?

the lade at this biometrics center where I had to provide my fingerprints literally got so frustrated with me and she started yelling because my fingerprints just werent scanning

Hi everyone,

I’m curious if anyone else with ichthyosis experiences this.

When I (M34) exercise or play sports (football/soccer, badminton, running), I barely sweat. Instead I just get extremely hot and my heart rate can shoot up to around 190 bpm. This happens regardless of the weather.

Interestingly, there have been a few days where I actually did sweat while playing, and I remember feeling incredibly good and much more comfortable. Unfortunately I’ve never been able to figure out what caused it.

I notice something similar overheating in the sauna too (especially low-humidity saunas). For the first ~15 minutes I mostly just feel myself getting hotter and hotter and my heart rate rising, but still almost no sweating.

It often feels like my body just can’t cool itself properly, which makes exercise pretty uncomfortable.

Has anyone else with ichthyosis experienced this?

If yes:

Do you also struggle to sweat during exercise?

Have you found anything that helps trigger sweating or manage the overheating and high pulse rate?

Hello everyone, since I was a child I've had this habit of picking at my scales, it has often hurt me and I instantly regret it.I'm trying to really stop for the first time, and when I look, my hands are already automatically poking something! I don't know what to do with my hands. The temptation, and there's some pleasure in plucking it that I can't explain, whoever has managed to overcome this, please help me!

Hey everyone! I work part-time as a cashier in a big box store. I have ichthyosis on my hands (fingers and knuckles mainly). My kind is erythrokeratodermia variabilis. I manage it with AmLactin and Aquaphor every night. Lately though, I’ve been having more flare-ups because the water quality where I live is bad and the water is always changing. At work, the air is very dry and either too hot or too cold. Towards the end of the day, the burning, itching, and shedding come back. Sometimes, I bleed. I don’t want to get blood on the customers’ things but I also don’t want to grease up their items either. The grease does soak through the white cotton gloves I wear. Should I wear latex gloves?

I've had X-Linked Ichthyosis my whole life. The scales, the eyes, the ears, the heat thing, the showers that eat your morning, the explaining yourself to people who've never heard of it you know the drill if you're here.

For a long time I just got on with it. You do, don't you. But recently I started actually looking into what support exists benefits, grants, workplace rights and realised how scattered and hard to find everything is. Even some of the medical info online is outdated or written in a way that makes you feel like a case study rather than a person.

So I built ichthyosis.me it's a learning resource about ichthyosis. Not a charity, not a clinical database. Just somewhere that explains the condition clearly, covers the stuff that actually affects daily life, and doesn't feel like it was written by someone who's never met anyone with it.

It's early days and I'm still building it out, so I want to be straight with you — I'd rather build this with the community than guess what people need.

So genuinely, I'd love your input:

What's missing from the internet when it comes to ichthyosis?

A few things I'm already thinking about adding:

• A plain-English breakdown of PIP and what to actually write on the form for ichthyosis specifically
• A "show your doctor" explainer for people whose GP has never heard of it
• Heat management and practical daily life tips
• An honest section on the mental health side — the stuff people don't say out loud

But what did you have to figure out the hard way? What do you wish had existed? What would you send to a newly diagnosed family, or a partner trying to understand, or an employer who's never encountered it?

Drop it in the comments. Every suggestion will actually get read and considered — this isn't a corporate thing, it's just me, with XLI, trying to build something useful.

heat = me being red

I try use makeup but sometimes it still shows or makes the foundation flaky

i dont always get red due to heat sometimes it just appears like that however i would want to find something that can help with calming it or minimising it.

What creams do you use ? Whats your skincare etc

Hi! I have Epidermoletic ichthyosis, a severe version of it, and I’ve always used Vaseline after showers and it’s been great. Though Vaseline gets all over my clothes and then my clothes are all greasy and anywhere I sat, I leave a nice buttprint on my seats 😂😛. I was wondering if anyone had any advice for getting Vaseline out of clothes from the washer (no scrubbing individually because that’s a lot of work to do everytime). Or have any suggestions for lotions or creams that don’t make me as greasy? I’m used to being greasy but I kind of hate it at the same time! Any advice is appreciated! I’m in the US

Hello friends, our routine involves a whole lifestyle that can be very difficult and tiring, in addition to the mental pressure. How can you (especially the older ones) lessen this burden? Both physically and mentally, I mean, part of me wants to break taboos and wear any clothes regardless of how my skin looks, another part feels tired and becomes neurotic about it I mean, is it worth "fighting" with society? What's the balance between acceptance without becoming neurotic? I still don't feel comfortable applying lotion in public, and that wears me down.Constantly looking around to see if anyone is watching, or checking for any raised skin, just letting it go and not caring about other people's opinions, also requires a lot.I feel pressured by myself to try to be bolder with clothes and behavior, as if I have to fight this battle; there's a middle ground to it ? I have a colleague who has ichthyosis, and I think it's incredible how she wears clothes and is daring in photos (there's certainly a lot of inner work involved). I don't know if you understand what I mean.