Overview
Acquired porencephaly is a condition in which fluid-filled cavities (cysts) form in the brain. Unlike congenital (inborn) porencephaly, the acquired form develops after birth due to damage to brain tissue. This damage is most often caused by events such as a stroke, infection, head trauma, or complications during or shortly after birth that interrupt blood flow to parts of the brain. When brain tissue is destroyed, the body replaces it with fluid-filled spaces that connect to the brain's normal fluid-filled chambers (ventricles) or to the surface of the brain. The symptoms of acquired porencephaly vary widely depending on the size and location of the cyst. Common problems include seizures, muscle weakness or paralysis on one side of the body (hemiparesis), delays in reaching developmental milestones, intellectual disability, speech and language difficulties, and vision problems. Some individuals have mild symptoms, while others are severely affected. There is no cure for acquired porencephaly. Treatment focuses on managing symptoms and supporting development. This may include anti-seizure medications, physical therapy, occupational therapy, speech therapy, and in some cases surgery to relieve pressure in the brain if the cyst grows or causes increased intracranial pressure. Early intervention with therapies can help children reach their best possible developmental outcomes. A team of specialists typically works together to provide comprehensive care.
Key symptoms:
Seizures or epilepsyWeakness or paralysis on one side of the bodyDelayed developmental milestonesIntellectual disabilitySpeech and language delaysVision problemsDifficulty with movement and coordinationLearning difficultiesMuscle stiffness or spasticityHeadachesFeeding difficulties in infantsBehavioral challengesReduced head growth in infants
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Acquired porencephaly.
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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 Acquired porencephaly.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.What is the size and location of the brain cyst, and how does that affect my child's specific symptoms?,What caused the brain injury that led to porencephaly, and could it happen again?,What seizure medications do you recommend, and what are the possible side effects?,What therapies (physical, occupational, speech) should we start, and how often?,Are there any signs of hydrocephalus or increased brain pressure that we should watch for?,What is the long-term outlook for development, learning, and independence?,Should we have follow-up brain imaging, and how often?
Common questions about Acquired porencephaly
What is Acquired porencephaly?
Acquired porencephaly is a condition in which fluid-filled cavities (cysts) form in the brain. Unlike congenital (inborn) porencephaly, the acquired form develops after birth due to damage to brain tissue. This damage is most often caused by events such as a stroke, infection, head trauma, or complications during or shortly after birth that interrupt blood flow to parts of the brain. When brain tissue is destroyed, the body replaces it with fluid-filled spaces that connect to the brain's normal fluid-filled chambers (ventricles) or to the surface of the brain. The symptoms of acquired porence
How is Acquired porencephaly inherited?
Acquired porencephaly follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Acquired porencephaly?
5 specialists and care centers treating Acquired porencephaly are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.