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Breaking Myths About Hydrocephalus: What’s Fact and What’s Fiction?

November 25, 2024

Hydrocephalus, a condition often misunderstood, is surrounded by myths that can lead to confusion and misinformation. It’s time to set the record straight by breaking down some common misconceptions and uncovering the facts about hydrocephalus.

Myth 1: Hydrocephalus only affects children

Fact: Hydrocephalus affects individuals across all age groups, including infants, children, adults, and the elderly. It is not confined to a specific stage of life. While congenital hydrocephalus is commonly diagnosed in infancy and early childhood, adults can also develop the condition later in life. For instance, Normal pressure hydrocephalus (NPH) primarily impacts older adults and is often misdiagnosed as Alzheimer’s, Parkinson’s, or the effects of aging. NPH is characterized by three key symptoms: difficulty walking (gait disturbances), urinary incontinence, and cognitive decline. Timely diagnosis and treatment, such as a shunt system, can greatly enhance the quality of life for those with NPH.

Myth 2: People with hydrocephalus cannot lead independent lives or pursue careers.

Fact: Many individuals with hydrocephalus lead independent lives, pursue education, and have successful careers. With appropriate medical care and support, they can achieve their goals and aspirations.

Myth 3: Hydrocephalus Is curable 

Fact: Hydrocephalus is a lifelong condition. While a shunt placement or endoscopic third ventriculostomy (ETV) can manage the symptoms, ongoing monitoring, and potential adjustments are often required. Shunts, for instance, may need revisions or replacements over time.

Myth 4: Physical activities are dangerous for people with hydrocephalus

Fact: With proper precautions, many individuals safely participate in sports and physical activities. Consulting with healthcare professionals helps determine suitable activities, ensuring safety and enjoyment.

Myth 5: Hydrocephalus Is rare

Fact: Hydrocephalus affects over 1 million people in the United States alone, making it far from rare. Raising awareness is crucial for ensuring timely diagnosis and effective treatment, which is why broader education and advocacy are so important.

Myth 6: Hydrocephalus is always noticeable and causes severe symptoms.

Fact: The severity of symptoms can vary widely among individuals with hydrocephalus. Some people may experience subtle symptoms, while others may have more severe and noticeable effects on their daily life.

Myth 7: If someone is smiling, they must be feeling fine.

Fact: Many people with invisible conditions, like hydrocephalus, often try to project an outward appearance that everything is okay to avoid judgment or being treated differently. A smile or calm demeanor may hide physical pain, emotional struggles, or fatigue. It’s important to understand that just because someone looks fine on the outside doesn’t mean they aren’t facing significant challenges on the inside. Show compassion—it can make all the difference.

Dispelling myths: Why It matters

Misinformation about hydrocephalus can lead to stigma and delays in seeking treatment. By breaking these myths, we promote understanding, compassion, and support for individuals living with the condition. Through education, families, caregivers, and communities can better navigate challenges and recognize the successes and strengths of those with hydrocephalus.

Learn more

Explore our resources to stay informed. Together, we can spread awareness and combat misconceptions, one myth at a time.

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