Voices from Our Community: Dr. Harold Conn’s Decade of NPH Misdiagnosis

The Hydrocephalus Association is commemorating the 50th anniversary of the recognition of normal pressure hydrocephalus (NPH) as a distinct medical syndrome through the journeys of members of our hydrocephalus community on the road to proper diagnosis and treatment of this life-altering condition.

Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

Four years ago, Mia Padron of Long Island, New York, was on a mission to make a difference for the life of her son and all other individuals living with hydrocephalus. Her son, Tyler, who is now 10, was born with hydrocephalus but not diagnosed until he was 23 months old. Those 23 months were […]

Voices from Our Community: David Walters Shares his Hydrocephalus Story

David Walters was diagnosed with hydrocephalus at 2 weeks old and has had one shunt revision. He is an active teenager and member of the Hydrocephalus Association Teens Take Charge program. Read his story.

Voices from Our Community: Joyce Schwartz Spreads Her Message about Normal Pressure Hydrocephalus

Joyce Schwartz shares her 23 year journey of searching for a diagnosis and then treatment for Normal Pressure Hydrocephalus (HA).

Voices from our Community: Madeleine Speaks Up About Hydrocephalus

By: Madeleine Daraowiche Hi, my name is Madeleine. I am 17 years old and will be a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed in utero, and had my first shunt placed when I was 15 days old. Since then, I have had six shunt revisions. […]

Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus

Fog is Lifted After 15 Years of Confusion and Misdiagnosis Milt Newman’s retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH), a treatable neurological disorder in which excess fluid […]

Voices from Our Community: Abby Shares Her Life Experiences With Hydrocephalus!

By: Abby Wood Hi!  My name is Abby.  I turned 12 years old at the end of August and this is a snapshot of my life.  I was born in Albuquerque, New Mexico. When I was born, I was very sluggish and tired. My parents found out that I had hydrocephalus a few weeks later […]

Teen Voices: Thankful I Found Teens Take Charge

From fundraisers, awareness and advocacy events to sharing personal stories and experiences on our website and social media networks, teens and young adults across the country are banning together to create a network of support for each other. Madeleine Darowiche shares how Teens Take Charge has benefited her life.

Living with Anxiety and Hydrocephalus Part 4

I rarely spoke a word during my first year in college. I was so anxious. It seemed like everything that could go wrong, definitely did…Madeleine continues her blog series.

Living with Anxiety & Hydrocephalus, Part 3

I was asked a question I had never been asked in a job interview, and I thought it was a great question. The question was: “What motivates you?”

Living with Anxiety & Hydrocephalus, Part 2

As a college student with anxiety and hydrocephalus, how do I cope with it all? That’s a bit of a tough question to answer, as no one has the same methods.

Living with Anxiety and Hydrocephalus

Madeleine shares her experience of living with the challenges of anxiety and hydrocephalus.

The First Year of College: An Honest Look at My Experience

Teens Take Charge Mentor Task Force Member, Madeleine Darowiche, shares the highlights and challenges of her first year away from home at college.

Starting College: Facing the Challenges & Embracing the Adventure

In her monthly Teens Take Charge blog, Madeleine Darowiche shares her experience of starting college and offers some tips for making this transition smoother.

Teens and Young Adults

If you’re a teen or young adult affected by hydrocephalus, we want you to know that you are not alone. Browse our teen and young adult pages to learn about resources to help you. This is YOUR place for information and empowerment.

Adult & Caregiver

A hydrocephalus diagnosis is overwhelming whether you’re a recently diagnosed adult or someone who’s been living with the condition for many years. If you’re a friend or family member, you’ve likely felt overwhelmed while caring for or supporting someone with hydrocephalus. A particular characteristic of hydrocephalus is that symptoms and challenges are often invisible to […]

Teen & Young Adult

If you’re a teen or young adult affected by hydrocephalus, we want you to know that you are not alone. Hydrocephalus can strike anyone at any time. Its primary treatment – the shunt – is far from perfect. Browse our teen and young adult pages to learn about resources to help you overcome the different […]

Add Your Voice to the My PaTH Story Booth Project

Add your hydrocephalus story to the MyPaTH Story Booth Project to help researchers better understand the hydrocephalus patient experience.

Boozle Bear Sew-a-Thon

Boozle Bears are used by doctors, nurses and parents to teach patients, old and young, about hydrocephalus and how shunting works.

Hydrocephalus on the Hill

Philip Brooks, a teen HA community member, recounts his experience during Rare Disease Week, when hundreds of people gathered to advocate for hydrocephalus and other conditions.

The Difficulties of Diagnosing Normal Pressure Hydrocephalus

Approximately 10% of those diagnosed with Alzheimer’s or dementia are living with Normal Pressure Hydrocephalus. Why is it so often mis- or undiagnosed?

Rare Disease Week

Rare Disease Day takes place on the last day of February each year in countries around the world. This international awareness campaign highlights rare diseases and their impact on patients’ lives. Hydrocephalus as a whole is not a rare disease. We have one million Americans affected by the condition, from infants to seniors. However, there are […]

National Day of Action is THURSDAY

This Thursday is a National Day of Action to support the Rally for Medical Research and the advocates raising their voices on Capitol Hill. PARTICIPATE!

Hydrocephalus Awareness Month 2015 is HERE!

September is Hydrocephalus Awareness Month! Here are 15 ways you can make an impact and raise awareness.

Hydrocephalus Awareness MATTERS!

September is HYDROCEPHALUS AWARENESS MONTH! To celebrate the 30 days of September, here are 30 ways you can help raise awareness. We hope we hear you raise your voice!

Health Policy for Hydrocephalus

Even as we achieve strides in raising awareness and increasing research funding, too many Americans with hydrocephalus still live with unaffordable, inaccessible or insufficient health insurance coverage. The hydrocephalus community is not alone. We share this struggle with everyone who has a chronic medical condition. Raising our voices together with the 100 million people in […]

CALL TO ACTION: PCORI Seeking Members for Advisory Panels

The Patient-Centered Outcomes Research Institute (PCORI) has announced openings on four Advisory Panels: Clinical Trails, Rare Disease, Assessment of Prevention, Diagnosis, and Treatment Options, and Improving Healthcare Systems.

The Pen is Mightier Than the Sword

Hydrocephalus Association Teens Take Charge Advisory Council member, Madeleine Darowiche, challenges us to raise awareness through our local media this Hydrocephalus Awareness Month 2013.

30 is the Magic Number THIS Hydrocephalus Awareness Month!

This September, the Hydrocephalus Association (HA) invites you to celebrate and honor the many faces of hydrocephalus, and to unite with us to create one strong voice of awareness during Hydrocephalus Awareness Month. Let’s challenge ourselves to find new ways to get involved in raising awareness through education and advocacy activities.

Looking Back…Moving Forward: With A Little Help From My Friends

In commemoration of the Hydrocephalus Association 30th anniversary, David Walters, Teens Take Charge member, shares his thoughts on the importance of our biannual conference and the impact of the Hydrocephalus Association (HA).

Water on the Brain?

TTC Advisory Council Member Madeleine Darowiche shares her recent experience with her mom and a man with Normal Pressure Hydrocephalus.

A Special Message: The Power of Our Voice

Hydrocephalus Association founders, Emily Fudge and Cynthia Solomon, deliver a special message about the power in our collective voice, and how we are more hopeful than ever that with continued persistence there will be a medical breakthrough for the hydrocephalus community.

Looking Back…Moving Forward: One Vision Built on Determination

Hydrocephalus Association commemorates our 30th anniversary with a series of interviews with members of our community. These intimate and conversational pieces provide both educational content as well as a historical perspective on the heart behind the work of our association. This week we sit down with two of our founding members, Emily Fudge and Cynthia Solomon, to discuss the early days of forming the association, including their vision and their challenges.

“Fall back” isn’t the way to start off this season!

The Hydrocephalus Association CEO, Dawn Mancuso, reflects back on September and Hydrocephalus Awareness Month.

What Do We Want? A CURE! When Do We Want It? NOW!

September is not the only month to raise awareness about hydrocephalus. Join us in celebrating the launch of our Advocacy Toolkit, a resource to communicate with elected officials and the media.

Raising Awareness…From Coast to Coast!

Strength. Perseverance. Endurance. Spirit. Do these traits sound familiar? Of course, these are all words that describe individuals touched by hydrocephalus. These words also describe Mark Paulissen and Mary Sodano. Their spirit of adventure and love for bicycling has spurred them onto a journey of a lifetime. Sponsored by Celsius drink company, Mark and Mary have challenged […]

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