Overview
This entry in the Orphanet rare disease database is marked as 'OBSOLETE,' meaning it was previously used to describe a condition called idiopathic recurrent and disabling cutaneous herpes — a term for repeated, severe outbreaks of herpes simplex virus (HSV) affecting the skin, where no clear underlying cause could be found. 'Idiopathic' means the reason why some people experience unusually frequent or severe outbreaks was unknown. 'Cutaneous' refers to the skin. Herpes simplex virus causes cold sores (HSV-1) or genital herpes (HSV-2), and in most people outbreaks are manageable. However, a small number of people experience outbreaks that are very frequent, painful, and disabling — meaning they significantly interfere with daily life. Because this classification is now considered obsolete, patients who were previously described under this label may now be evaluated under more specific diagnoses. Research has shown that some people with unusually severe or frequent herpes outbreaks may have identifiable immune system differences or genetic factors that explain their vulnerability. If you or someone you know experiences recurrent, disabling herpes outbreaks, speaking with a dermatologist and an immunologist is strongly recommended to look for an underlying cause.
Key symptoms:
Frequent, recurring blisters or sores on the skinPain, burning, or tingling at blister sitesSores that take a long time to healOutbreaks severe enough to interfere with daily activitiesSkin redness and swelling around affected areasFatigue or feeling unwell during outbreaksEmotional distress or anxiety related to frequent outbreaksScarring or skin changes from repeated sores
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Could there be an underlying immune system problem causing my frequent outbreaks, and how would we test for that?,Should I take antiviral medication every day to prevent outbreaks, or only when one starts?,Are there any genetic tests that might explain why my outbreaks are so severe?,What should I do if my current antiviral medication stops working?,Are there any clinical trials or newer treatments I should know about?,How can I manage the emotional impact of living with frequent outbreaks?,What specialists should be part of my care team given how disabling my outbreaks are?
Common questions about OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes
What is OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes?
This entry in the Orphanet rare disease database is marked as 'OBSOLETE,' meaning it was previously used to describe a condition called idiopathic recurrent and disabling cutaneous herpes — a term for repeated, severe outbreaks of herpes simplex virus (HSV) affecting the skin, where no clear underlying cause could be found. 'Idiopathic' means the reason why some people experience unusually frequent or severe outbreaks was unknown. 'Cutaneous' refers to the skin. Herpes simplex virus causes cold sores (HSV-1) or genital herpes (HSV-2), and in most people outbreaks are manageable. However, a sma
How is OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes inherited?
OBSOLETE: Idiopathic recurrent and disabling cutaneous herpes follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.