Diagnosed Hailey-Hailey Disease: A Flare-Plan Checklist

If Hailey-Hailey flares make walking or getting dressed difficult, ask your dermatology team for instructions you can find quickly when discomfort begins. This checklist is for someone with a confirmed diagnosis preparing that individual plan.

Put the immediate-contact instruction first

If the condition suddenly becomes much worse and much more painful than usual, BAD advises contacting your GP or dermatologist immediately. This can be a sign of herpes simplex infection that may need antiviral treatment.¹

Contact the team for assessment rather than treating that change as a routine flare or waiting to complete a log. Confirm its urgent contact route and where to seek care if the usual service is unavailable.

Confirm the beginning of your prescribed plan

The leaflet describes topical anti-inflammatory treatment and notes that early pricking or itching can precede a flare. The medicine plan needs instructions for your own affected sites.¹

• Ask which symptoms should trigger the plan the clinician has prescribed for you.
• Write down the exact product, location, amount, frequency and duration it instructs you to use.
• Ask what to do if you are unsure whether a new change belongs to your usual condition.
• Keep the prescription instructions with the service’s contact details.

Do not turn another person’s routine into your own steroid or antibiotic schedule. Ask the prescriber to resolve unclear instructions before you use the medicine.

Describe what friction changes in your day

BAD notes that burning or itching can worsen when skin surfaces rub. Severe flares can interfere with walking and work. It suggests cool, loose clothing as one way to reduce friction and heat.¹

• Tell the team which clothing edge, movement or task feels uncomfortable.
• Ask what changes fit your affected site and your usual work or activity.
• Discuss what support you need if a flare prevents you from carrying out the plan.

Bring a specific example, such as a collar you cannot tolerate or a walk you had to cut short. Ask the team to help you make a practical adjustment without assuming every flare has the same trigger.

Agree on review and infection questions

Skin infection can complicate Hailey-Hailey disease. A flare with discharge may cause increased pain or a strong smell, and a clinician may need to assess treatment for infection.¹

• Ask which changes should prompt an earlier review.
• Confirm how to report a treatment that is not helping or a reaction that concerns you.
• Check how to obtain prescribed supplies and whom to contact if they run out.
• Write down the next review date and what the team wants you to bring.

Keep observations short: where it hurts, when the change began and what you have used under the prescribed plan. The clinician should decide whether an infection or another change needs different treatment.

Skin, Head to Toe includes a twelve-week Skin Log and a red-flag list and visit script. Use them to organize observations and questions alongside your dermatology team’s flare instructions. Explore the skin playbook.