Overview
High altitude pulmonary edema (HAPE) is a potentially life-threatening condition that occurs when fluid builds up in the lungs at high elevations, typically above 2,500 meters (about 8,200 feet). It is a form of severe altitude sickness. When you travel to high altitudes too quickly, the lower oxygen levels cause blood vessels in the lungs to tighten and pressure to rise. This increased pressure forces fluid out of the blood vessels and into the air sacs of the lungs, making it very hard to breathe and get enough oxygen into the body. The main symptoms include severe shortness of breath (even at rest), a persistent cough that may produce pink or frothy sputum, extreme fatigue, chest tightness, and a feeling of suffocation, especially when lying down. People may also notice a rapid heartbeat, blue or gray lips and fingernails, and confusion or difficulty thinking clearly. Symptoms usually develop within 2 to 4 days of arriving at high altitude. While HAPE is considered a rare condition overall, some individuals have a genetic susceptibility that makes them more likely to develop it repeatedly. Treatment focuses on immediate descent to a lower altitude, supplemental oxygen, and in some cases medications like nifedipine. Most people recover fully if the condition is recognized and treated promptly. However, HAPE can be fatal if left untreated. Prevention strategies include gradual ascent, proper acclimatization, and sometimes preventive medications for those known to be susceptible.
Also known as:
Key symptoms:
Severe shortness of breath, even at restPersistent cough, sometimes producing pink or frothy sputumExtreme tiredness and weaknessChest tightness or pressureRapid heartbeatBlue or gray lips and fingernailsDifficulty breathing when lying downGurgling or rattling sounds when breathingConfusion or difficulty thinking clearlyFever or low-grade temperatureHeadacheInability to walk or exercise normallyFeeling of suffocation at night
Clinical phenotype terms (21)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsMona Lichtblau — NA
Mona Lichtblau — NA
Mona Lichtblau — NA
Latin American Pediatric Collaborative Network
Capital Medical University
Institute of Sport - National Research Institute, Poland — NA
Insel Gruppe AG, University Hospital Bern — NA
West China Hospital
Insel Gruppe AG, University Hospital Bern — NA
Peking University First Hospital — PHASE2, PHASE3
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for High altitude pulmonary edema.
9 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 High altitude pulmonary edema.
Community
No community posts yet. Be the first to share your experience with High altitude pulmonary edema.
Start the conversation →Latest news about High altitude pulmonary edema
Disease timeline:
New recruiting trial: Effect of Acute Hypoxia on RIght VEntRicular Function in Healthy Adults.
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: HighCycle: Effect of Acetazolamide on Pulmonary Artery Pressure in Women Compared to Men
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: Effects of High Altitude on AMPK Activation
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: HighCycle Study: Effect of High Altitude on Acute Mountain Sickness in Women Related to Their Menstrual Cycle Phase
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: Evaluation of Membrane Lung Function in High-altitude Regions
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: Inhaled Nitric Oxide for High Amplitude Pulmonary Edema (HAPE)
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: The Impact of Physical Training Under Normobaric Hypoxia on Oxidative Stress Level, Inflammatory State, Intestinal Damage, and Mitochondrial Metabolism in Young Males
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: Altitude and Outcomes in Pediatric ARDS: A Multicenter Study
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: Advair HFA in Healthy and HAPE Predisposed Subjects
A new clinical trial is recruiting patients for High altitude pulmonary edema
New recruiting trial: Measurement of Cardiopulmonary Variables After Acute Exposure to High Altitude
A new clinical trial is recruiting patients for High altitude pulmonary edema
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.Am I at higher risk for HAPE based on my medical history or family history?,Should I take preventive medication before traveling to high altitude, and if so, which one and when should I start?,What altitude is safe for me, and how quickly can I ascend?,Are there any tests that can help determine my susceptibility to HAPE?,What emergency supplies and medications should I carry when traveling to high altitude?,After having one episode of HAPE, what are my chances of it happening again?,Are there any underlying heart or lung conditions that could make me more susceptible?
Common questions about High altitude pulmonary edema
What is High altitude pulmonary edema?
High altitude pulmonary edema (HAPE) is a potentially life-threatening condition that occurs when fluid builds up in the lungs at high elevations, typically above 2,500 meters (about 8,200 feet). It is a form of severe altitude sickness. When you travel to high altitudes too quickly, the lower oxygen levels cause blood vessels in the lungs to tighten and pressure to rise. This increased pressure forces fluid out of the blood vessels and into the air sacs of the lungs, making it very hard to breathe and get enough oxygen into the body. The main symptoms include severe shortness of breath (even
How is High altitude pulmonary edema inherited?
High altitude pulmonary edema follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for High altitude pulmonary edema?
Yes — 9 recruiting clinical trials are currently listed for High altitude pulmonary edema on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat High altitude pulmonary edema?
25 specialists and care centers treating High altitude pulmonary edema are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.