Living with Staphylococcal necrotizing pneumonia
A rare, serious lung infection from a type of staph bacteria that makes a toxin, with fast-moving breathing problems.
Understanding Staphylococcal necrotizing pneumonia
It causes widespread pneumonia that moves fast and damages lung tissue. People often start with flu-like symptoms such as fever, cough, and chest pain. Coughing up blood and low blood pressure can occur. Breathing problems can quickly become severe. It is most often listed as starting in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever
- Cough
- Chest pain
- Trouble breathing
- Low blood oxygen
- Low blood pressure
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
Specialists who may be involved include lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Lung and breathing specialists (pulmonologists)
- 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 caused by a Staphylococcus aureus bacteria strain that produces a toxin called Panton-Valentine leukocidin.
Also known as: necrotizing pneumonia caused by panton-valentine leukocidin producing staphylococcus aureus
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 Staphylococcal necrotizing pneumonia.
Explore research for Staphylococcal necrotizing pneumonia
Explore actively recruiting Staphylococcal necrotizing pneumonia studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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