Living with Necrobacillosis
A rare and potentially serious complication of a bacterial infection, usually in teenagers and young adults, that spreads from the throat.
Understanding Necrobacillosis
It usually affects previously healthy teens and young adults. It most often follows a bacterial throat infection but can follow infections of the ears, salivary glands, sinuses, or teeth. The initial infection spreads into the neck and forms an infected blood clot in a large neck vein. It can then spread through the blood to the lungs and other organs.
Signs & symptoms
GARD doesn't list a detailed symptom list, but the summary describes these features:
- A throat or other infection that spreads to the neck
- An infected blood clot in the neck vein
- Infection spreading to the lungs
- Blood clots in the lungs
- Infection spreading to other organs
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 usually caused by the bacteria Fusobacterium necrophorum, although other bacteria can be responsible. It develops after an initial infection such as a throat infection.
Also known as: human necrobacillosis; lemierre postanginal sepsis; lemierre syndrome; postanginal sepsis; postanginal sepsis secondary to orophyngeal infection; septic phlebitis of the internal jugular vein
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 Necrobacillosis.
Explore research for Necrobacillosis
Explore actively recruiting Necrobacillosis studies with HealthSpark.
Find actively recruiting studies for Necrobacillosis with HealthSpark. Share your city to explore research near you.
- 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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