Living with Dermatitis herpetiformis, familial
A rare long-term skin condition with groups of very itchy blisters, often linked to trouble digesting gluten.
Understanding Dermatitis herpetiformis, familial
It is more common on the knees, elbows, buttocks, and shoulder blades. The exact cause is not known, but it is often linked to being unable to digest gluten.
Signs & symptoms
GARD doesn't list a symptom list. Based on its summary, features include:
- Groups of very itchy blisters
- Raised skin spots
- Fluid-filled sores
- Red spots like hives
- Burning and redness
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Global Autoimmune Institute
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Global Autoimmune Institute
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the exact cause isn't known, but it is often linked to being unable to digest gluten. It lists autosomal dominant inheritance for this familial form.
Also known as: dh; hereditary dermatitis herpetiformis
Patient organizations
- Global Autoimmune InstituteDermatitis herpetiformis, familial · United States
You are more than your diagnosis
Perspectives from people navigating life with Dermatitis herpetiformis, familial.
Explore research for Dermatitis herpetiformis, familial
Explore actively recruiting Dermatitis herpetiformis, familial studies with HealthSpark.
Find actively recruiting studies for Dermatitis herpetiformis, familial with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Dermatitis herpetiformis, familial studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Dermatitis herpetiformis, familial
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Dermatitis herpetiformis, familial experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.