Tips & Hacks from Real People

I apply my emollient before getting out of the bath, while I'm still wet. Game changer — the water helps spread it and you absorb so much more moisture. Never use a towel before emollient.

Cling film (wet wrap) over emollient on legs for 30 minutes in the evening dramatically softens thick scale. Sounds weird but I've been doing it for 15 years. Emu oil underneath for really stubborn patches.

In winter I swap my regular emollient for 50:50 paraffin as an overnight treatment — put on socks and gloves after applying to hands and feet. Wake up with the softest skin. Worth the grease.

I use a urea scrub in the shower twice a week on my legs. I make my own: table salt + a little vegetable oil + a few drops of tea tree. Rinse off, then apply moisturiser immediately. Keeps the scale manageable without harsh exfoliators.

Cooling towels (like the ones athletes use) kept in a cool bag are my secret weapon for summer. Wet them with cold water and wrap around neck and wrists — drops core temp in minutes. Never go to an event without them.

Battery-powered handheld fans plus a spray bottle with water mixed with a few drops of rose water. The evaporative cooling is incredible. Keep one in your bag at all times. Get the silent ones for meetings.

I carry a medical letter from my consultant explaining my thermoregulation problems. Airlines and venues have let me bring ice packs, cooling vests, and extra water that would normally be restricted. Worth getting this from your dermatologist.

Got my employer to agree to a desk fan as a workplace adjustment under the Equality Act. Also negotiated to work from home on very hot days. HR didn't know much about ichthyosis — I gave them a one-page summary from FIRST (the charity). Made all the difference.

I keep a small emollient kit in my desk: a 100g tub, a small tube of urea cream, and a pack of unscented wipes. I reapply at lunch. My colleagues got used to it quickly and now nobody notices. Removes the anxiety of running out.

I requested a healthcare passport from my employer — it's a document that records my condition and reasonable adjustments. Means new managers already know before I have to explain anything. Ask HR or Occupational Health about this. Total game changer for dignity at work.

For jobs that involve standing or manual work, Tubigrip bandaging over emollient on legs stays on all day and stops the cream transferring to everything. Looks like a compression bandage, nobody questions it, and your legs stay moisturised all day.

Chlorine in pools strips everything. I slather 50:50 paraffin all over before swimming — acts as a barrier. Rinse off chlorine immediately after, then apply my full routine before leaving the changing room. Pool swimming actually improves my skin if I do the routine right.

The Dead Sea app genuinely taught me something: saline water is hugely beneficial. I add Dead Sea salts to my baths twice a week (cheap from Amazon). The sodium chloride helps soften scale and the minerals reduce inflammation. 30-minute soak, then cream immediately.

Silk pillowcases and silk bed sheets are the single best investment I've made. Dramatically less friction, less scale on the sheets, and I sleep cooler. Yes, they're expensive. Yes, absolutely worth it. Start with just a pillowcase and see the difference.

Bedroom humidifier on overnight. I use a cool-mist one to maintain 50-60% humidity. The difference in how my skin feels in the morning versus without it is astonishing. Especially in winter when central heating dries everything out.

Temperature-controlled mattress pad (like a Chilipad or BedJet) keeps me at exactly the right temperature overnight without sweating. Life-changing for thermoregulation problems. Expensive but my occupational therapist helped me apply for a grant from the Harlequin Ichthyosis research fund.

For flights, I use a hydrating facial mist on my whole face and exposed skin every hour. Plane cabins drop to 10-15% humidity — devastating for ichthyosis. Aisle seat so you can get up. Compression socks over emollient to keep legs moisturised. Avoid alcohol and caffeine on the flight.

Download the offline maps for airports/hotels before you travel — never be caught without knowing where the nearest pharmacy is. I also email hotels in advance to ask for a bath rather than shower-only room, and that they stock extra towels. Most are very accommodating.

I spent years trying to hide my ichthyosis. When I finally stopped — stopped wearing long sleeves in summer, stopped making excuses — everything changed. Most people don't care as much as we think they do. And the ones who react badly were never worth having in your life.

Changing Faces (the charity) provides free one-to-one counselling specifically for people with visible differences. I did 8 sessions. Better than general CBT because the therapist already understood the social aspects of a visible condition — I didn't have to explain from scratch.

Preparing a short script for when people ask about my skin has helped enormously. Something matter-of-fact: "It's a genetic skin condition called ichthyosis — I was born with it. It's not contagious and it doesn't hurt. I'm totally fine!" Rehearse it until it feels natural. Confidence transfers.

Central heating tanks my skin. I run it at 18°C and use an extra blanket instead of 22°C. Also got a humidistat on the heating so it won't switch on above 55% relative humidity. My skin in winter is now nearly as good as summer — which was unthinkable before.

Aquaphor (Eucerin's original formulation) as a barrier cream over my regular emollient in very cold or windy weather. It creates an extra occlusive layer. My face and hands are now protected against wind burn which used to crack and bleed every winter.

Ask your GP to prescribe emollients on a bulk prescription — 500g tubs instead of 50g tubes, and 3 months at a time. I was prescribed 500g of 50:50 paraffin every month for years and paid no prescription fees (use prepayment certificate if you pay). Most GPs don't realise the quantities ichthyosis patients need unless you tell them.

Prepayment Certificate (PPC) — if you're on 2+ regular NHS prescriptions per month, the annual PPC saves a fortune. As of 2026 it's about £32 for 3 months or £111 for 12 months vs £9.90 per item. You can buy one retroactively within a month of a prescription.

Get a referral to a specialist dermatology centre rather than relying on a local DGH. The difference in management is enormous — they know about acitretin dosing, biologics for Netherton, CHILD syndrome treatment, Refsum dietary management. Most GPs don't realise specialist centres exist. GREAT ORMOND STREET for children, St John's Institute in London, Sheffield, Bristol for adults.

NEVER use topical steroids if you have Netherton — I had to learn this the hard way. Topical steroids absorb systemically due to barrier dysfunction and can cause adrenal suppression. Tacrolimus ointment is the safer alternative for inflammation. Get a clear written plan from your dermatologist about what IS safe.

Dupilumab changed my life after 22 years of Netherton. If you haven't asked about it, push your dermatologist. It's off-label but there's good evidence now and some trusts will fund it via exceptional circumstances or IFR. Take evidence (the 2021 papers) to your appointment. Join the ISG Facebook group for advice on getting it funded.

Dark water-resistant scales on the neck and trunk can look like a dirty neck to others. I found that explaining briefly at the start of new relationships (work, romantic, social) removes the awkwardness. I say it casually: "I have a skin condition — the marks on my neck are part of it." Done.

Consistency beats intensity. Doing a moderate routine twice a day, every day is infinitely more effective than doing an elaborate routine occasionally. When life gets busy, cut steps — but never skip entirely. Even a 2-minute re-moisturise at lunch beats nothing.

My son was born as a collodion baby and terrified us. Within 6 weeks the membrane had shed completely and his skin was essentially normal. He's 8 now and uses a regular moisturiser once a day. The support from ISG UK during those first weeks was the only thing that kept us sane — call them.