Tips for Managing a Rare Blistering Disease

RARE RESOURCES

Nov 14

Written By Nina Wachsman

The blisters and sore patches that occur with bullous pemphigoid (BP) and pemphigus vulgaris (PV) can be very painful. It can lead to life-threatening infections or, because painful blisters can occur in the mouth and throat, it can make it hard to swallow and eat, leading to significant weight loss or malnutrition.

There’s no cure, but there are treatments that can help.

If you are diagnosed with BP or PV, you may be referred to a skin specialist, or dermatologist, for tests and treatment. Treatments may include oral steroids, topical steroids, immune suppressant medicines, or more intensive treatments.

There are some lifestyle management tips you can do that can help.

Many bamboo tooothbruses on a counter and in a glass jar

1. Practice good oral hygiene

Use a soft toothbrush

Avoid harsh brushing of the gums
Use mint-free toothpaste
Floss daily
Use non-alcohol-based antiseptic mouthwash
Maintain regular dental/oral health checkups

Ask your doctor for specialized tips on how to care for your mouth and gums during a painful outbreak.

A tub, running water, and various skin products and scrubs

2. Take care of your skin

Avoid the sun and heat

Dress in soft, breathable clothing
When bathing, avoid scrubbing your skin
Use a gentle cleanser
Lightly pat dry with a towel leaving the skin damp

If you are dealing with blisters or wounds, practice good wound care. You can ask your healthcare provider to demonstrate how to dress a wound, ask how you can keep it clean, and whether you should use antibiotic ointments or emollients.

It’s important that you know what to look for if there are signs of infection and when to call your healthcare provider. Early, prompt treatment is the best way to manage an infection.

A crowded table with silverware, glasses filled with white wine, bread, plates of gourmet food, and bottles of water

3. Make changes to your diet

It’s important to avoid some foods that can irritate sores in your mouth. Avoid foods that are:

spicy (examples, hot sauces, sriracha, curry, hot pepper)
crunchy (nuts, crunchy peanut butter, chips, crisp raw veggies)
acidic (tomatoes, orange juice and citrus)
or very hot (steaming foods or hot coffee and tea)

4. Take care of your eyes

Choose glasses instead of contacts

Wear sunglasses
Maintain regular eye health checkups

A person in a meditative position in the outdoors as they welcome the sunrise

5. Keep stress in check

Living with a rare blistering disease can be stressful. But with many autoimmune conditions, stress can worsen pemphigus. Avoiding stress is not realistic, but learning to manage it can help.

Regular physical exercise can help with stress – just be sure to avoid any physical contact (like contact sports)
Make time for hobbies and passions
Consider practicing mindful exercises such as meditation or deep breathing
Have someone you can talk openly with

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Nina Wachsman

Nina is the co-founder and president of Know Rare

Nina’s experience goes across therapeutic categories from rare disease like pulmonary arterial hypertension (PAH), autoimmune disease and cancer, and her expertise ranges from market research and strategy to patient and digital marketing.

Additionally, she has been a founder and angel investor of a biotech start-up, helped brand an oncology patient organization, Aim at Melanoma, and worked on patient education for Genentech’s leading HER2 therapy, Herceptin.

Nina is also a mother, grandmother, artist, and author of The Gallery of Beauties, a novel set in the Venice in the early 17th century.

https://www.linkedin.com/in/nina-wachsman-4937514/