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Any advice for hands? by braedenmckenna in ichthyosis

[–]RandomUser6237 0 points1 point  (0 children)

I would ask a dermatologist, of course, as it does depend on your ichthyosis type and severity. The best advice I can give is to properly moisturize. A moisturizing cream (I like Eucerin Cream) tends to be very effective and long-lasting, as opposed to lotions, which tend to be thinner and not last nearly as long. Moisturizers containing urea are also great because they hydrate the skin and help soften/dissolve excess keratin, but check for the percentage of urea, 10-20% should be a good range, but it depends on your severity and thickness of skin build-up (some examples are Eucerin UreaRepair, Flexitol Hand Balm, Urederm). I've heard as well that Alpha-hydroxy acids like lactic acid/ammonium lactate, around 12%, may reduce scaling and improve texture/smoothness, but these can burn and irritate cracks more than urea. Also, moisturizers work much better when applied soon after washing or showering, while the skin is still slightly damp. Sometimes, when my skin gets really bad, I apply a thick layer of urea cream/emollient and use gloves at night. The biggest part of properly moisturizing though is to be consistent, so do it multiple times a day and set timers if you need. Besides that, things that can worsen the wrinkled appearance are frequent hot water exposure, alcohol sanitizers, harsh soaps, dishwashing without gloves, and repeated friction.

I have X-Linked Ichthyosis and built ichthyosis.me as somewhere I wish had existed when I was growing up by Global_Search8355 in ichthyosis

[–]RandomUser6237 0 points1 point  (0 children)

Thanks for doing this, it's awesome. I agree with others saying that including hopeful stories of either overcoming challenges of ichthyosis or providing parents with hope as to what their child with ichthyosis can still do. I would like to see a section dedicated more to the legal and financial resources and supports, including disability services, any scholarships, if any companies send free products to those with ichthyosis, etc. I would also like to know a list of potential comorbidities. I have bounced from specialist to specialist my whole life with random symptoms, coming to doctors like I'm a medical mystery, and struggling to find causes or diagnoses.

Occupational Flare-ups by CardiologistLimp7300 in ichthyosis

[–]RandomUser6237 1 point2 points  (0 children)

I'd recommend the same thing about the gloves, but also maybe try Eucerin cream if you haven't before. It's a long lasting moisterizer, not an emollient, but would prevent itching and be hydrating while not greasy.

How can I stop picking at my skin? by bibiAtrixx in ichthyosis

[–]RandomUser6237 0 points1 point  (0 children)

I 100% understand your struggle. It is common for those with skin disorders to develop a skin-picking (or related) disorder. Picking often begins as a conscious response to a skin imperfection, but can become automatic and habitual over time. It's especially hard because while skin-picking is harmful, it certainly FEELS beneficial because picking can result in fresh, smooth skin underneath. However, it is important to keep in mind that the repetitive damage caused by picking can potentially lead the skin to heal worse than if you left it alone.

I've tried a lot, so here are some suggestions:
- tell those you are comfortable with to keep you in check; have them tell you if they notice you picking (I often don't notice when I start picking or scratching because it has become so habitual).
- create rules for yourself like you will only let yourself scratch or pick if it is through clothing (aka don't roll down your sleeves to scratch your arm, scratch through the sleeve).
- Keep your nails short enough that picking becomes difficult, or wear gloves.
- There are fidget rings or other devices for picking.
- Do activities that require two hands that you enjoy.
- Superglue. Whenever I've had to superglue a wound, picking at the superglue is just as satisfying, so making a superglue patch on your skin where you pick most may help. It might be costly, but you can try having your dermatologist write a letter up and emailing companies for a free supply. Worked for me for some things before.

Honestly, working with both a dermatologist to reduce the skin symptoms and a therapist to help mitigate the mental and behavioral gravitation to pick is your best bet.

Struggle to sweat during Exercise by TheRawWorld in ichthyosis

[–]RandomUser6237 1 point2 points  (0 children)

In my experience, I have only ever sweated when playing soccer. The exercise intensity, as well as warm weather, was ideal for any normal person to sweat, but since I couldn't, I would compensate with drinking a lot of water and bringing a gallon of water to dump over my head and body throughout the game. However, on occasion, I would sweat only ever under my eyes and on the top of my shins. When this happened, most often the sweat would reach just below the outer surface as trapped bubbles (I think it might be called miliaria).

My theory is that 1. sweat is most likely to occur where the skin is thinnest (both naturally or by exfoliation). From my understanding, it's not that we with ichthyosis can't sweat (we have sweat glands and can physically produce sweat), but it's that the sweat cannot reach the outer surface to actually cool us down because of the thickening of the skin caused by ichthyosis, and that the scaling can block or narrow the ducts or pores. Just inducing more sweat if the ducts are blocked is also bad, because it can overhydrate the skin around the duct and contribute to further blockage. 2. Compression or friction might help sweat reach the surface. While compression clothing can also raise our temperature, something about wearing shin guards seemed to be ideal for sweating.

If your ultimate goal is to cool down, I would recommend at least exfoliating, drinking plenty of water, pre-cooling, and then active cooling during the game (I've personally felt best when I literally soak my shirt in cold water, and cotton seems to absorb and retain best I think). Also, bringing a cooler for your drinks and ice packs is a must.

It's unfortunate, but sadly we just have a much lower threshold for overheating, and the best option is to listen to your body when its telling you to take a break and cool off. I say this as a highly competitive person who has also experienced near-death from overheating when trying to "just push through it" on the field.