Living with Necrotizing soft tissue infection
A rare infection that spreads quickly through deep soft tissues and causes pain.
Understanding Necrotizing soft tissue infection
It can be caused by one kind of germ or several kinds. Bacteria are the usual cause, and fungal infections have been described in rare cases. Early signs on exam can be subtle and may include redness, blisters, firm swollen tissue under the skin, and tenderness to touch. It can occur at any time in life.
Signs & symptoms
GARD doesn't list a detailed symptom list, but the summary describes these features:
- Pain in deep soft tissues
- Redness of the skin
- Blisters
- Firm swollen tissue under the skin
- Tenderness to touch
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.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
It is an infection that can be caused by one or several types of bacteria. Fungal infections have been described in rare cases.
Also known as: nsti
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Necrotizing soft tissue infection.
Explore research for Necrotizing soft tissue infection
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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