Overview
Systemic disease with skin involvement (Orphanet code 290836) is a broad classification used to describe a group of rare conditions where a disease that affects multiple body systems also causes noticeable changes in the skin. This is not a single disease but rather a category that includes many different disorders. In these conditions, the immune system, blood vessels, connective tissues, or other internal organs may be affected, and the skin serves as a visible window into what is happening inside the body. Skin symptoms can include rashes, thickening or hardening of the skin, color changes, blisters, nodules, or ulcers. Because this is a grouping category rather than one specific disease, the exact symptoms, severity, and course vary widely depending on the underlying condition. Examples of systemic diseases with skin involvement include lupus, scleroderma, sarcoidosis, vasculitis, and certain autoinflammatory or autoimmune syndromes. Patients may experience fatigue, joint pain, organ dysfunction, and skin problems all at the same time. Treatment depends entirely on the specific underlying diagnosis and may range from immune-suppressing medications to targeted biologic therapies. Early and accurate diagnosis is important because timely treatment can help prevent organ damage and improve quality of life.
Key symptoms:
Skin rashes or lesionsThickening or hardening of the skinJoint pain or swellingFatigue and low energyFever without clear infectionSkin color changes or discolorationBlisters or ulcers on the skinSwollen lymph nodesOrgan involvement such as kidney or lung problemsMuscle weakness or painSensitivity to sunlightHair lossRaynaud's phenomenon (fingers turning white or blue in cold)
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Systemic disease with skin involvement.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Systemic disease with skin involvement 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 Systemic disease with skin involvement.
Community
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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.What specific condition do I have within this category, and what is causing my symptoms?,What tests do I need to confirm the diagnosis and check for organ involvement?,What treatment options are available, and what are the potential side effects?,How often will I need follow-up visits and blood tests?,Are there lifestyle changes I should make, such as sun protection or dietary adjustments?,Should I see a genetic counselor or have genetic testing done?,Are there clinical trials or new treatments I should know about?
Common questions about Systemic disease with skin involvement
What is Systemic disease with skin involvement?
Systemic disease with skin involvement (Orphanet code 290836) is a broad classification used to describe a group of rare conditions where a disease that affects multiple body systems also causes noticeable changes in the skin. This is not a single disease but rather a category that includes many different disorders. In these conditions, the immune system, blood vessels, connective tissues, or other internal organs may be affected, and the skin serves as a visible window into what is happening inside the body. Skin symptoms can include rashes, thickening or hardening of the skin, color changes,
Which specialists treat Systemic disease with skin involvement?
8 specialists and care centers treating Systemic disease with skin involvement are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.