Overview
Infective dermatitis associated with HTLV-1 (also called IDH or HTLV-1-associated infective dermatitis) is a chronic skin condition that occurs in people infected with the human T-lymphotropic virus type 1 (HTLV-1). This disease most commonly affects children and teenagers, though it can also appear in adults. It is considered a rare complication of HTLV-1 infection and is thought to result from the virus weakening the immune system, making the skin more vulnerable to bacterial infections, particularly Staphylococcus aureus and beta-hemolytic streptococci. The condition causes a severe, recurring eczema-like rash that typically affects the scalp, ears, neck, armpits, groin, and areas around the nose and mouth. The rash is often crusted, oozing, and can be very itchy and uncomfortable. Swollen lymph nodes (lymphadenopathy) are also common. The skin lesions tend to come back repeatedly even after treatment, which can be frustrating for patients and families. Treatment mainly involves long-term antibiotics to control the bacterial skin infections, along with topical treatments to manage the rash. While antibiotics can improve symptoms significantly, the condition often returns when treatment is stopped. Importantly, infective dermatitis associated with HTLV-1 is considered a marker for increased risk of developing other serious HTLV-1-related diseases later in life, including adult T-cell leukemia/lymphoma (ATLL) and HTLV-1-associated myelopathy (HAM/TSP). Regular medical follow-up is therefore essential.
Also known as:
Key symptoms:
Chronic eczema-like rash on the scalpCrusted, oozing skin lesions around the earsRash in the armpits and groinSkin rash around the nose and mouthRash on the neck and upper bodySevere itchingSwollen lymph nodesWatery discharge from the noseCrusting of the nostrilsRecurring skin infectionsFine scaling of the scalp resembling dandruffSkin thickening in affected areasPale or washed-out appearance of the skin in affected areas
Sporadic
Usually appears on its own, not inherited from a parent
Childhood
Begins in childhood, roughly ages 1 to 12
FDA & Trial Timeline
10 eventsEverfront Biotech Co., Ltd. — PHASE2, PHASE3
Assistance Publique - Hôpitaux de Paris — NA
T-MAXIMUM Pharmaceutical Inc — PHASE2
NRG Oncology — PHASE3
ACYCLOVIR: New indication approved
European Organisation for Research and Treatment of Cancer - EORTC — PHASE3
Nader Sanai — EARLY_PHASE1
Mayo Clinic — NA
LMU Klinikum
Katy Peters, MD, PhD — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
1 availableGamimune N
For prophylaxis of children with clinical or immunologic evidence of human immunodeficiency virus to decrease the frequency of serious and minor bacterial infections and the frequency of hospitalizati…
For prophylaxis of children with clinical or immunologic evidence of human immunodeficiency virus to decrease the frequency of serious and minor bacterial infections and the frequency of hospitalization, and to increase the time free of serious bacterial infections.
Clinical Trials
View all trials with filters →No actively recruiting trials found for Infective dermatitis associated with HTLV-1 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 Infective dermatitis associated with HTLV-1.
Community
No community posts yet. Be the first to share your experience with Infective dermatitis associated with HTLV-1.
Start the conversation →Latest news about Infective dermatitis associated with HTLV-1
Disease timeline:
New recruiting trial: The RECSUR-study: Resection Versus Best Oncological Treatment for Recurrent Glioblastoma (ENCRAM 2302)
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: Metabolic Characterization of Space Occupying Lesions of the Brain
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: ASTX727 in Recurrent/Progressive Non-enhancing IDH Mutant Gliomas
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: UNITy-BasED MR-Linac Adaptive Simultaneous Integrated Hypofractionated Boost Trial for High Grade Glioma in the Elderly
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: A Surgical Window of Opportunity Clinical Trial of Troriluzole in Recurrent IDH Wild-Type Glioblastoma
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: ViCToRy: Vorasidenib in Combination With Tumor Specific Peptide Vaccine for Recurrent IDH1 Mutant Lower Grade Gliomas
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: Allogenic Adipose-Derived Mesenchymal Stem Cells for the Treatment of Recurrent Glioblastoma or Recurrent Astrocytoma in Patients Undergoing Craniotomy
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: The PALSUR-study: Palliative Care Versus Surgery in High-grade Glioma Patients (ENCRAM 2203)
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: Vorasidenib Maintenance for IDH Mutant Astrocytoma
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
New recruiting trial: ERAS-801 for the Treatment of Resectable and Progressive or Recurrent IDH Wildtype Grade IV Glioblastoma or Astrocytoma With an EGFR Amplification or Mutation, ERAS801-SARG Trial
A new clinical trial is recruiting patients for Infective dermatitis associated with HTLV-1
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.How long will my child need to take antibiotics, and what are the risks of long-term antibiotic use?,What signs should I watch for that might indicate the disease is getting worse or developing into something more serious?,How often should we come in for follow-up visits and blood tests?,Should other family members be tested for HTLV-1?,What is the risk of my child developing adult T-cell leukemia/lymphoma or HTLV-1-associated myelopathy later in life?,Are there any activities or environmental factors my child should avoid to prevent flare-ups?,Is it safe for a mother with HTLV-1 to breastfeed other children?
Common questions about Infective dermatitis associated with HTLV-1
What is Infective dermatitis associated with HTLV-1?
Infective dermatitis associated with HTLV-1 (also called IDH or HTLV-1-associated infective dermatitis) is a chronic skin condition that occurs in people infected with the human T-lymphotropic virus type 1 (HTLV-1). This disease most commonly affects children and teenagers, though it can also appear in adults. It is considered a rare complication of HTLV-1 infection and is thought to result from the virus weakening the immune system, making the skin more vulnerable to bacterial infections, particularly Staphylococcus aureus and beta-hemolytic streptococci. The condition causes a severe, recur
How is Infective dermatitis associated with HTLV-1 inherited?
Infective dermatitis associated with HTLV-1 follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Infective dermatitis associated with HTLV-1 typically begin?
Typical onset of Infective dermatitis associated with HTLV-1 is childhood. Age of onset can vary across affected individuals.
Which specialists treat Infective dermatitis associated with HTLV-1?
9 specialists and care centers treating Infective dermatitis associated with HTLV-1 are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.
What treatment and support options exist for Infective dermatitis associated with HTLV-1?
1 patient support program are currently tracked on UniteRare for Infective dermatitis associated with HTLV-1. See the treatments and support programs sections for copay assistance, eligibility, and contact details.