Show Your Doctor

For Your GP

What is Ichthyosis?

Ichthyosis is a group of genetic skin disorders characterised by dry, thickened, scaling skin. It is caused by mutations affecting skin barrier function and keratinocyte differentiation. It is not contagious, not caused by poor hygiene, and is a lifelong condition.

Clinical Presentation

Generalised xerosis (dry skin) with fine to thick scaling
Hyperkeratosis, often worsening in winter or low humidity
May present with pruritus, fissuring, or secondary infection
Variable severity: mild cosmetic concerns to severe barrier dysfunction

NHS Treatment You Can Prescribe

Emollients (on FP10): Cetraben, Diprobase, Doublebase, E45, Hydromol, Oilatum, Aveeno, CeraVe — liberal application multiple times daily
Keratolytics: Salicylic acid 2-6% or urea 10-40% creams (caution in children)
Topical retinoids: Tretinoin cream (off-label, specialist guidance recommended)
Infection management: Topical or oral antibiotics if secondary bacterial infection present

⚠ Referral Pathways: Severe cases, diagnostic uncertainty, or inadequate response to first-line treatment should be referred to dermatology or a Rare Skin Disease Centre (e.g., St John's Institute of Dermatology, London; Royal Victoria Infirmary, Newcastle).

Key Points

Lifelong genetic condition — not curable, but manageable
Daily emollient therapy is essential (not just "moisturiser")
May impact quality of life, mental health, and workplace/school attendance
Patients may require sick notes for flare-ups or dermatology appointments
Consider referral to dermatology for optimisation or genetic counselling

For more information: ichthyosis.me | British Association of Dermatologists patient information leaflets

For Your Employer / School

What You Need to Know

Ichthyosis is a genetic skin condition that causes dry, thickened, scaling skin. It is not contagious, not infectious, and not caused by poor hygiene. It is a lifelong condition that requires daily management.

How It Affects Daily Life

Daily skincare routines can take 30-60 minutes (morning and evening)
Temperature sensitivity — overheating or cold environments worsen symptoms
Physical discomfort — itching, skin tightness, pain from cracking
Fatigue from managing symptoms and disrupted sleep
Visible scaling or redness may cause self-consciousness

Reasonable Adjustments That Help

Temperature control: Access to fans, ability to adjust heating, breaks in cooler areas
Flexible start times: Morning skincare routines can be time-intensive
Rest breaks: Time to reapply creams or manage discomfort
Medical appointments: Flexibility for dermatology visits (often during work/school hours)
PE/swimming exemptions (schools): Chlorine and public changing rooms can be problematic
Dress code flexibility: Long sleeves/trousers may be needed for comfort or to cover scaling

Equality Act 2010: Ichthyosis may be considered a disability if it has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities. Employers and schools have a legal duty to make reasonable adjustments.

What NOT to Say

"Have you tried moisturiser?" (Yes. Daily. For life.)
"Is it contagious?" (No. It's genetic.)
"You just need to drink more water." (No. It's a skin barrier disorder.)
"It's just dry skin." (No. It's a lifelong genetic condition.)

For more information: ichthyosis.me | Ichthyosis Support Group (UK charity)

For Your Partner / Family

What It Feels Like

Imagine your skin constantly feels tight, dry, and uncomfortable — like you've been out in freezing wind all day, every day. Scaling builds up fast. Itching is relentless. Skin cracks and bleeds. And no amount of "just using moisturiser" fixes it.

It's exhausting. Not just physically, but mentally. You're hyper-aware of how your skin looks. You notice people staring. You field the same questions over and over. You spend hours every week managing something most people never think about.

What Actually Helps

Understand it's not cosmetic. It's painful, itchy, and impacts every part of life.
Don't assume it's "just dry skin." It's a genetic condition. Lifelong. Not curable.
Offer practical support: Help with applying creams to hard-to-reach areas. Run a bath. Pick up prescriptions.
Be patient with routines. Morning and evening skincare takes time. It's not optional.
Respect temperature needs. Overheating makes it worse. So does cold. It's a narrow comfort zone.
Don't make a big deal about flare-ups. Acknowledge it, but don't dwell. "That looks sore — what can I do?" is perfect.
Challenge ignorance when you see it. Correct myths. Shut down rude comments. Advocate.

What Doesn't Help

Suggesting random products. ("Have you tried coconut oil?")
Comparing it to your own "dry skin in winter."
Asking if they've seen a doctor. (Yes. Many times.)
Making them feel self-conscious about shedding skin.
Treating it like a taboo topic. It's okay to ask questions — just be respectful.

The best thing you can do: Treat them normally. Don't pity them. Don't fixate on their skin. Just be there, be kind, and be willing to learn.

For more information: ichthyosis.me | Join online communities (Reddit: r/Ichthyosis)

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