Overview
Bilateral massive adrenal hemorrhage is a rare and serious condition in which both adrenal glands — small organs that sit on top of each kidney — experience severe bleeding. The adrenal glands produce essential hormones such as cortisol (which helps your body respond to stress) and aldosterone (which helps control blood pressure and salt balance). When both glands are damaged by heavy bleeding, they can no longer make enough of these hormones, leading to a life-threatening condition called acute adrenal insufficiency or adrenal crisis. This condition can be triggered by several factors, including severe infections (especially meningococcal sepsis, known as Waterhouse-Friderichsen syndrome), blood clotting disorders, use of blood-thinning medications (anticoagulants), major surgery, trauma, or conditions that cause abnormal blood clotting such as antiphospholipid syndrome. Newborns can also be affected, particularly after a difficult birth. Symptoms come on suddenly and can include severe abdominal or flank pain, low blood pressure, shock, fever, nausea, vomiting, confusion, and extreme weakness. Without prompt treatment — primarily emergency replacement of cortisol and fluids — this condition can be fatal. Early recognition and aggressive supportive care are critical to survival. Long-term survivors typically need lifelong hormone replacement therapy to compensate for the lost adrenal function.
Also known as:
Key symptoms:
Sudden severe abdominal painPain in the sides or back (flank pain)Dangerously low blood pressureShock (cold, clammy skin, rapid heartbeat)High feverNausea and vomitingExtreme fatigue and weaknessConfusion or altered mental stateSkin rash or purplish spots (purpura), especially with infectionDizziness or faintingRapid weight lossLow blood sugarDehydrationDark skin discoloration (if chronic adrenal insufficiency develops)
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
1 eventUniversity of Florida — PHASE1, PHASE2
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Bilateral massive adrenal hemorrhage.
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Specialists
View all specialists →No specialists are currently listed for Bilateral massive adrenal hemorrhage.
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 Bilateral massive adrenal hemorrhage.
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Caregiver Resources
NORD Caregiver Resources
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What caused the adrenal hemorrhage in my case, and can that cause be treated or prevented from recurring?,What are the exact doses and timing for my hormone replacement medications?,How do I adjust my medication during illness, surgery, or physical stress?,Can you teach me or my family how to give an emergency hydrocortisone injection?,What symptoms should prompt me to go to the emergency room immediately?,Will I need to see an endocrinologist for the rest of my life, and how often?,Are there any medications, supplements, or activities I should avoid?
Common questions about Bilateral massive adrenal hemorrhage
What is Bilateral massive adrenal hemorrhage?
Bilateral massive adrenal hemorrhage is a rare and serious condition in which both adrenal glands — small organs that sit on top of each kidney — experience severe bleeding. The adrenal glands produce essential hormones such as cortisol (which helps your body respond to stress) and aldosterone (which helps control blood pressure and salt balance). When both glands are damaged by heavy bleeding, they can no longer make enough of these hormones, leading to a life-threatening condition called acute adrenal insufficiency or adrenal crisis. This condition can be triggered by several factors, inclu
How is Bilateral massive adrenal hemorrhage inherited?
Bilateral massive adrenal hemorrhage follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.