The medical community designates specific periods to focus public attention on various health conditions to drive education and funding. These awareness campaigns are designed to elevate conditions that may be less understood or those requiring significant research investment. Neurological disorders often benefit from this focused attention due to their complexity and chronic nature. Raising public awareness helps to foster a more informed society and encourages support for individuals and families navigating these challenging diagnoses. This strategy moves a condition into the public conversation, which can influence policy and research priorities.
Designating September as Awareness Month
The observance of Hydrocephalus Awareness Month is formally held every September in the United States. This designation is a direct result of sustained advocacy efforts by organizations dedicated to the condition, most notably the Hydrocephalus Association. Selecting a specific month creates a concentrated period for national media attention and community-based activities.
The movement has gained legislative recognition at both the federal and state levels. The U.S. Congress has made official declarations supporting the month, and numerous governors and city leaders have issued similar proclamations. During September, local landmarks often illuminate their buildings in blue, the color associated with hydrocephalus awareness, to visually represent this widespread support. This coordinated effort solidifies September as the annual time for focused education and fundraising across the country.
Understanding Hydrocephalus
Hydrocephalus is a neurological condition characterized by an abnormal buildup of cerebrospinal fluid (CSF) within the brain’s ventricles, the deep cavities inside the brain. This condition is often colloquially described as “water on the brain,” though the fluid is CSF, which normally flows through the brain and spinal cord before being reabsorbed into the bloodstream. When the production, flow, or absorption of this fluid is disrupted, the resulting excess accumulation causes the ventricles to widen and place pressure on the surrounding brain tissue.
The causes of hydrocephalus are diverse, categorized as congenital (present at birth) or acquired later in life. Congenital causes stem from genetic factors, complications of premature birth, or developmental issues like spina bifida. Acquired hydrocephalus results from events including head trauma, brain tumors, stroke, or infections such as meningitis. A specific form, Normal Pressure Hydrocephalus (NPH), typically affects adults over 60, where slow fluid buildup causes significant symptoms even if pressure does not appear elevated.
Symptoms in Infants
Symptoms vary depending on the person’s age and the severity of the fluid buildup. In infants, whose skull bones have not yet fused, the most noticeable signs are often physical, such as an unusually large head or a rapid increase in head circumference. A bulging or tense soft spot on the top of the head, known as the fontanel, may also be present, along with irritability, vomiting, and a downward gaze of the eyes.
Symptoms in Older Children and Adults
In older children and adults, whose skulls are rigid, the pressure manifests differently since the skull cannot expand. Common signs include persistent headaches, nausea, and vomiting. They may also experience difficulty with balance and coordination, a decline in memory or concentration, and problems with vision. Older adults with NPH often exhibit a distinct triad of symptoms: difficulty walking, loss of bladder control, and progressive cognitive impairment.
The Purpose of Awareness Campaigns
The primary goal of the September awareness campaigns is to increase public recognition of hydrocephalus, a condition that affects over one million Americans yet remains relatively unknown compared to other disorders. Increased visibility combats the frequent misdiagnosis of the condition, especially in adults where NPH symptoms are often mistakenly attributed to other age-related conditions. By educating the public and healthcare providers, advocates hope to promote early diagnosis, which improves long-term outcomes and quality of life.
The campaigns also serve a function in fundraising and advocating for increased research investment. Advocacy groups work to secure greater federal funding and private donations to explore the underlying causes of hydrocephalus and to develop improved treatment options. Currently, the only effective treatment involves brain surgery, often to implant a shunt system, making the push for less invasive or preventative therapies a focus.
Awareness month activities aim to drive legislative action and policy changes that benefit the hydrocephalus community. These efforts include advocating for dedicated government tracking of the condition, such as through a national registry, to better understand its prevalence and impact. The organized push in September provides a voice to influence decision-makers on the need for sustained support and resources for patients and caregivers.
Ways to Get Involved and Support Research
Individuals can contribute to the awareness efforts in a number of practical and accessible ways throughout September:
- Harnessing digital platforms is an effective method, as sharing factual information about the condition on social media helps educate friends and followers. Organizations often provide toolkits and pre-made graphics to facilitate online awareness drives.
- Directly supporting research by participating in patient-powered registries like HAPPIER. This registry collects data from patients and caregivers, providing researchers with real-world information on symptoms and quality of life to inform future studies.
- Making financial contributions, whether through direct donation or participating in local fundraising events like “Walks to End Hydrocephalus,” directly funds research grants and educational programs.
- Volunteering time to the cause, perhaps by becoming a peer support volunteer or a community network leader to help newly diagnosed individuals.