More from Emily on Hydrocephalus Awareness Month 2025

September is hydrocephalus awareness month. Hydrocephalus is a chronic, neurological condition that is caused by an abnormal accumulation of cerebrospinal fluid in the cavities (ventricles) of the brain. Cerebrospinal fluid is a clear liquid that protects the brain and spinal cord. Most children and adults who have hydrocephalus (like me) have a valve placed in their head called a shunt that drains the fluid directly into their abdomen or heart. Out of the twenty-six surgeries I have had, many were shunt malfunctions. My hydrocephalus was caused by a brain bleed I had at birth. I was born three months early. Another challenge was I had two shunt replacement surgeries within a short period before I began ninth grade. That was a very challenging because it made the start of my high school experience more difficult than others. Living with hydrocephalus is particularly challenging during certain weather conditions like rain or storms because I get awful headaches. Having a condition like hydrocephalus has also had a couple benefits like being able to join online forums and connect with others in similar situations as well as offering advice to parents who are now in the position my parents once were. I have also met one of my close friends online with the condition. Hydrocephalus is a very hard condition to live with, but it does not stop me from doing anything I put my mind to.

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My Voice: Finding the Power in My Voice and Strength in My Self-Advocacy

Picture of Maraya outdoors in rose colored flee c e As the school year comes to a close for many of us, I wanted to introduce myself, as well as reflect on how incredible this school year has been, and the many lessons it brought. My name is Maraya, and I am the new Youth Engagement Coordinator at CPAC. Being a youth myself, as well as having plenty of lived experience, I am deeply passionate about self-advocacy, youth voice, independence, and empowering others to develop pride in who they are. Since working for CPAC, I have had some awesome conversations with the Youth Advisory Board (YAB) members, and am excited to see what new and exciting things we get into moving forward. Aside from working at CPAC, I am also currently a student at a CT State Community College. That being said, I can’t help but reflect on all the insightful lessons and experiences this experience has brought my way. This school year has been one full of growth, lessons...

Dyslexia Awareness Month By Ashley Kelly

On Monday mornings, I would hop off my school bus, glowing with enthusiasm and sporting a massive smile, eager to greet any teacher who would listen to my weekend stories. I would approach them and say, "Wanna know something?" This was my catchphrase; in fact, I used it so often that my parents and my special education reading teacher jokingly threatened to buy matching t-shirts with my photo and the phrase on them. The topic didn't matter—whether it was about cave exploration or how the Vanderbilt kids spent their summers in Rhode Island—I had learned something, felt smart, and wanted to share it. Feeling smart was tough as a student with dyslexia. Frustration with reading, speech, and math came often. My parents were aware of this, so on weekends and holidays, we explored unfamiliar places, had new experiences, and learned through hands-on activities. I was like the sponges I saw at the Mystic Aquarium, soaking up nutrients to survive. In my case, those nutrients were ...

Hydrocephalus Awareness Month by Emily Ball

September is Hydrocephalus Awareness Month. Hydrocephalus is a neurological condition caused by an abnormal buildup of cerebrospinal fluid within the ventricles or brain cavities. It’s controlled by a device called a shunt that regulates the flow of the fluid. Hydrocephalus can be present at birth or acquired afterward. Both children and adults can have this condition. There are communities online where people with the condition and their families can connect and which can help families and individuals. Head injuries, intraventricular hemorrhage aka strokes, or brain tumors are some causes of the condition. Some symptoms of untreated hydrocephalus in children are headaches, blurred vision, and balance issues, as well as cognitive issues. My connection with this condition is that I had a stroke at birth and a brain bleed that led to multiple disabilities, including hydrocephalus. As a small, premature infant, I had multiple surgeries until the neurosurgeons could finally get ...

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