Overview
Hydroa vacciniforme (HV) is a rare skin condition that causes an unusual and severe sensitivity to sunlight, mainly ultraviolet (UV) light. It most commonly begins in childhood and is characterized by a recurring blistering rash that appears on sun-exposed areas of the skin, such as the face, ears, and backs of the hands. After sun exposure, small fluid-filled blisters (vesicles) develop, which then break open and form crusted sores. As these sores heal, they leave behind permanent pock-like scars that resemble smallpox vaccination marks — which is where the name 'vacciniforme' comes from. The condition typically follows a seasonal pattern, flaring up in spring and summer when sun exposure is greatest, and improving during winter months. In most cases, hydroa vacciniforme is a self-limiting condition that gradually improves or resolves by early adulthood. However, there is a more severe form called hydroa vacciniforme-like lymphoproliferative disorder (HVLPD), which is associated with chronic Epstein-Barr virus (EBV) infection and can progress to a type of lymphoma. This severe form is more commonly seen in certain populations, particularly in Latin America and Asia. Treatment focuses on strict sun protection and avoidance of UV light. There is no cure for hydroa vacciniforme, but symptoms can be managed with photoprotective measures, and in some cases, medications that suppress the immune system or antiviral therapies may be considered, especially for the more severe lymphoproliferative form.
Key symptoms:
Blistering rash on sun-exposed skinSmall fluid-filled blisters on the face, ears, and handsCrusting and scabbing of skin soresPermanent pock-like scars after healingSkin redness and swelling after sun exposureItching or burning sensation on affected skinSeasonal flare-ups in spring and summerFacial swelling, especially around the eyesSkin necrosis (tissue death) in severe casesFever in severe formsEnlarged lymph nodes in severe formsEnlarged liver or spleen in severe formsSensitivity to even brief sun exposure
Clinical phenotype terms (18)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Hydroa vacciniforme.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Hydroa vacciniforme at this time.
New trials open frequently. Follow this disease to get notified.
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 Hydroa vacciniforme.
Community
No community posts yet. Be the first to share your experience with Hydroa vacciniforme.
Start the conversation →Latest news about Hydroa vacciniforme
No recent news articles for Hydroa vacciniforme.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
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.Does my child have classic hydroa vacciniforme or the more severe lymphoproliferative form?,Should my child be tested for Epstein-Barr virus infection?,What is the best sun protection strategy for my child's specific situation?,Are there any medications that could help reduce flare-ups or scarring?,How often should we schedule follow-up visits, and what should we monitor at home?,Is there a risk that this condition could progress to lymphoma, and what warning signs should I watch for?,Can you recommend any psychological support resources for my child to cope with the social impact of this condition?
Common questions about Hydroa vacciniforme
What is Hydroa vacciniforme?
Hydroa vacciniforme (HV) is a rare skin condition that causes an unusual and severe sensitivity to sunlight, mainly ultraviolet (UV) light. It most commonly begins in childhood and is characterized by a recurring blistering rash that appears on sun-exposed areas of the skin, such as the face, ears, and backs of the hands. After sun exposure, small fluid-filled blisters (vesicles) develop, which then break open and form crusted sores. As these sores heal, they leave behind permanent pock-like scars that resemble smallpox vaccination marks — which is where the name 'vacciniforme' comes from. Th
How is Hydroa vacciniforme inherited?
Hydroa vacciniforme follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Hydroa vacciniforme typically begin?
Typical onset of Hydroa vacciniforme is childhood. Age of onset can vary across affected individuals.
Which specialists treat Hydroa vacciniforme?
2 specialists and care centers treating Hydroa vacciniforme are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.