Soothing the Skin You’re In: Practical Care for Pemphigus and Pemphigoid

Living with pemphigus or pemphigoid means getting to know your body in a new way. These are rare, chronic autoimmune diseases that affect the skin and mucous membranes, often making them feel fragile, painful, or unfamiliar. The symptoms may come and go in flares, and even the most routine tasks (like brushing your teeth or getting dressed) can suddenly feel overwhelming. It’s okay to grieve the changes you’re experiencing. Just as importantly, it’s okay to take extra time to care for yourself.

Here are some tips from the IPPF community, shared by those who live with pemphigus or pemphigoid and have learned to adapt with kindness and resilience:

• Choose soft, tagless clothing made from natural or moisture-wicking fibers.
• Avoid long hot showers; go for lukewarm and use gentle cleansers that are unscented and dye-free.
• Pat your skin dry, in place of rubbing. Better yet, drip dry
• Moisturize to protect your intact skin helps maintain the skin barrier and can reduce discomfort. Choose creams or ointments that are fragrance-free and formulated for sensitive skin
• Use alternatives to tape to hold dressings in place such as cohesive bandages, gauze wrap, snug clothing, and tubular bands.
• Consider non-stick pads to cover wounds
• Wear hats and/or clothing made of SPF fabric
• Rest when you need to
• Brush your teeth with a toddler/child-size toothbrush
• When mint/cinnamon toothpaste hurts, turn to children’s toothpaste
• Stay hydrated – Drinking water throughout the day helps to keep your mouth moist and supports healing
• Follow your medication regime and take your medicines on time

Remember: self-care is not selfish. Taking steps to reduce discomfort, support healing, and preserve your emotional well-being is essential for navigating life with a rare disease. You deserve comfort, every day. For additional information, visit our patient resources page.

Next Time: “Finding Foods that Work for You When You Have Oral Lesions“