TTC Blog

The Other Side of the HA WALK

HA WALKS are about raising awareness about Hydrocephalus and funds for the Hydrocephalus Association’s core services of support, education, advocacy, and research. But, the WALKS are also about bringing people together and making life-long connections and friendships.

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About Brady’s Dream

My name is Megan, and I’m the big sister of Brady. My brother was diagnosed with hydrocephalus at birth, and I want to help find a cure.

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It’s CYBER MONDAY! Thinking About A Tablet As A Holiday Gift?

As the holidays are approaching and technology gadgets become the “gift to give”, there has been a concern about shunts and the use of tablets (iPads, Galaxy tablet…etc.) in the recent years. Can they change the shunt’s setting?

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Seizures and Hydrocephalus

November is Epilepsy Awareness month and the Hydrocephalus Association would like to address the topic of hydrocephalus and seizures. Seizures are not an uncommon occurrence in people with hydrocephalus. However, no correlations have been found between the number of shunt revisions or the site of shunt placement and the risk of developing seizures.

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2012 Hydrocephalus Association TTC Scholarship Recipients

The Hydrocephalus Association Teens Take Charge program trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to take charge of the condition and become self-advocates with both health professionals and with their legislators. Through a generous grant from the Medtronic Foundation, the Hydrocephalus Association is able to award five scholarships, in the amount of $1,000, to teens and young adults (ages 17 to 25) who are affected by hydrocephalus.

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Papilledema, Vision Loss, and Hydrocephalus

Papilledema is an optic disc swelling that is secondary to elevated intracranial pressure around the brain associated with hydrocepahlus.The biggest concern with increased intracranial pressure is there is always the potential for visual loss secondary to the papilledema.

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Our Girl, Lexi, Sees Stars!

Teen with hydrocephalus selected by the Ellen Degeneres Show to be a part of the audience in the October 25th episode with Taylor Swift.

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Making Life Happen: Living Life with Spina Bifida and Hydrocephalus

October is Spina Bifida Awareness Month and October 25th is the first World Spina Bifida and Hydrocephalus Day sponsored by the International Federation for Spina Bifida and Hydrocephalus (IF) and supported by the European Parliament. In the Hydrocephalus Association’s efforts to raise awareness about spina bifida and hydrocephalus, we would like to highlight an inspiring young adult from our community. Meet Luke Russell, a freshman at the University of Wisconsin-Whitewater who plans to major in marine biology with either a second major or a minor in psychology. He has spina bifida and hydrocephalus.

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October is National Bullying Prevention Month

“Bullying is unwanted, aggressive behavior among school aged children that involves a real or perceived power imbalance. The behavior is repeated, or has the potential to be repeated, over time. Both kids who are bullied and who bully others may have serious, lasting problems.” (stopbullying.gov) Bullying. We hold on to the 1950s image of the […]

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Hydrocephalus Association Launches Spanish-language Pages on Hydrocephalus

Hydrocephalus Association launches Spanish-language pages on hydrocephalus The Hydrocephalus Association proudly announces the launch of our Spanish-language information pages on hydrocephalus. Our launch falls at the midpoint of Hispanic Heritage month (mid-September through mid-October) as well as serves as a celebratory ending to September’s Hydrocephalus Awareness month. The Spanish-language pages provide critical information to Spanish-speaking […]

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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.

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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. […]

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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 […]

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Congratulations to Our 2012 Scholarship Recipients!

We are pleased to announce the 2012 Hydrocephalus Association Scholarship Awards recipients. The scholarships program marks its 18th year and we are very proud to honor these amazing young adults. Despite the challenges and obstacles of having hydrocephalus, these future young leaders of our community are able to further their education, help their community and […]

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Astronaut Mark Kelly to Headline our 12th National Conference

By Dawn Mancuso, HA CEO Captain Kelly’s biographical information generously provided by Keppler Speakers I am so excited about this news I just had to make it the subject of my blog this month – Captain Mark Kelly will be speaking at our hydrocephalus conference in June! Mark Kelly is an American astronaut, retired US […]

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Meet Teens Take Charge (TTC) Council Member: Madison

By: Madison Pardi Hi, my name is Madison and I am 14 years old and a freshman in high school. I was diagnosed with hydrocephalus when I was 10 weeks old. I have had 5 surgeries and my last shunt revision was 11 years ago. When I was a baby I crawled and walked later […]

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12 National Conference on Hydrocephalus: Travel Tips

As you make your way to the 12th National Conference on Hydrocephalus in Bethesda, MD, here is some information to help you plan your trip. Area Airports 1)    Washington Dulles International Airport Chantilly, VA www.metwashairports.com/dulles/dulles.htm Distance from hotel: 25 miles 2)    Ronald Reagan Washington National Airport Arlington, VA www.metwashairports.com/reagan/reagan.htm Distance from hotel: 23 miles 3)   […]

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Register Today for the 12th National Conference on Hydrocephalus!

June 27-July 1, 2012 Bethesda North Marriott Hotel & Conference Center, Bethesda, MD The goal of the conference is to provide tools and connections to address the medical, educational and social challenges of living with hydrocephalus and to provide the opportunity for an enjoyable get together! Hydrocephalus is a chronic condition for which there is […]

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2012 Hydrocephalus Scholarships Now Available

The Hydrocephalus Association is pleased to offer nine scholarships to young adults with hydrocephalus. The scholarships are $1,000 each and will be awarded in June.  To read more about the instructions, criteria and how to apply please click here.  We are accepting applications now through April 1, 2012!

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Read About Transition Care in Our Hydrocephalus Resource Library

By Tom Smith, HA Adult Services & Outreach Coordinator A paper by Harold Rekate, MD, ‘The Pediatric Neurosurgical Patient: The Challenge of Growing Up’, published in Seminars in Pediatric Neurology, Vol. 16, 2009 discusses the difficulties faced by children born with hydrocephalus and Spina Bifida as they move from the coordinated care of pediatric facilities […]

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2012 Hydrocephalus Association Scholarships

By Karima Roumila, MPH, Community Programs Director We are very pleased to offer nine scholarships to young adults with hydrocephalus. On the 18th year of the program we are honored to announce the amount of each scholarship has been increased to $1,000. These scholarships are funded by the Hydrocephalus Association and by two Gerard Swartz […]

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Elijah Speaks Up About Hydrocephalus!

By Elijah Lawrence I was diagnosed with hydrocephalus before I was born. When I was four days old, I had my first shunt put in. Since then, I have had four revisions, but I have had my current shunt for five years. I am treated at the Children’s National Medical Center in Washington D.C. I […]

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Ashley Takes Charge of Her Hydrocephalus!

Introduction by Jennifer Bechard, Support Group Liaison Recently, Teens Take Charge Advisory Council member, Nicole Padron, asked the following question on Facebook: “What is some helpful advice that you would give someone who has been recently diagnosed with hydrocephalus?” Teens across the country began sharing their experiences with hydrocephalus as well as advice for individuals […]

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Results of our Facebook post: “What caused your hydrocephalus?”

By Karima Roumila, MPH, Community Programs Director After posing this question to our Facebook members we received many comments from our community about the causes of their hydrocephalus as well as their age of diagnosis.  61% of the respondents said they or their loved one were born with hydrocephalus, meaning they have congenital hydrocephalus, while, […]

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Imagine No Hydrocephalus

by Rick Smith, HA Acting CEO As we put the final touches on our five year Research Initiative Plan, we wanted to find an additional way to convey our hope for the impact of increased hydrocephalus research. We were going to release this video with the plan but because September is National Hydrocephalus Awareness month, […]

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Talking to your Doctor

We asked on our Hydrocephalus Facebook community page: “Do you prepare a list of questions to ask your or your child’s doctor before the appointment?” We were so pleased to see the majority of our community members answered “yes” to last week’s Facebook poll question, as it is very critical to be prepared before a […]

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Announcing the 2011 Hydrocephalus Association Scholarship Awardees

We are so pleased and humbled to announce the 2011 Hydrocephalus Association Scholarship Awards recipients. The scholarships program marks its 17th year and we are very proud to honor these amazing young adults. Despite the challenges and obstacles, these future young leaders of our community are able to further their education, help their community and […]

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Our Hydrocephalus Resource Library is growing like a tree in well tilled soil!

By Pip Marks, HA Director of Support & Education Every week new published articles related to hydrocephalus are being added to our Hydrocephalus Resource Library.  For example, check out this very interesting, new paper authored by Dr. Leland Albright “Hydrocephalus shunt practice of experienced pediatric neurosurgeons”. This study evaluates the different ways eight extremely experienced […]

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Traveling with Hydrocephalus

We asked on our Facebook Fan page: “If you are planning to travel this summer have you inquired about neurosurgeons in the area you are visiting, in case of an emergency?” Here is what you said: After looking at the results, we had asked Debby Buffa, Hydrocephalus Association Board Member, mother of two young adults […]

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Workplace Communication Tips for People Living with Disabilities

by Dave Carl, job coach and guest blogger My primary focus as a social worker is working with individuals living with disabilities teaching a variety of independent living skills including employment. Through my career I have seen the progress of people living with disabilities in the workforce who at first had very low self-confidence and […]

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Veteran Hydrocephalus WALK Chairs Training – A Meeting of Minds

by Pip Marks, HA Director of Support and Education Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records including images (CT scans and MRIs) is good advice for any person receiving medical attention. For those who have hydrocephalus or other chronic conditions, it is […]

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Neurodevelopment of Children and Teens with Hydrocephalus

By Jay Wellons, M.D. and David Nilsson, Ph.D. Article first appeared in Pathways, Fall edition 2008 From a developmental perspective, hydrocephalus, as with other forms of neurologic compromise, demonstrates its most prominent disruption to ongoing neurodevelopmental progression of the individual child. As such, many of the developmental consequences of childhood are less obvious, but as […]

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Brain Awareness Week: Part 2, Exploring Areas of the Brain Affected by Hydrocephalus

by Karima Roumila As a follow up to the previous article on the anatomy and physiology of the brain and of Brain Awareness Week activities, we would like to continue our learning and explore the terms we so often hear when dealing with hydrocephalus. These definitions are taken from our various educational publications, which are […]

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Brain Awareness Week: Pt. 1, The Anatomy & Physiology of the Brain

The Dana Alliance for Brain Initiative launched Brain Awareness Week (BAW) back in 1996. The Hydrocephalus Association proudly partners with the Dana Foundation for this global campaign to increase public awareness about the progress and benefits of brain research. This global coalition of BAW partners includes more than 2000 universities, K-12 schools, hospitals, patient groups, museums, […]

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Hydrocephalus and Your Vision

by Pip Marks, HA Director of Support and Education Changes in eye vision of any kind are critical to report as they may well be related to shunt failure/malfunction.  Consult with your doctor, neurosurgeon or ophthalmologist, immediately if you ever experience any kind of change in your vision: blurriness, gray outs, double vision, etc. Increased […]

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Announcing the 2011 Scholarships

Hydrocephalus Association 2011 Scholarship Applications Available We are so pleased to start this New Year by announcing the new cycle for Hydrocephalus Scholarships. The Hydrocephalus Association (HA) awards each year eight distinguished scholarships to eight capable and promising young adults who have been dealing with the complexities and challenges of hydrocephalus. Please click here for […]

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Hydrocephalus Teens Take Charge – Haylea Speaks Up!

Haylea Lynn Blank : How has having hydrocephalus impacted my life? I was born premature at twenty-six weeks of gestation. I was one of twins. We were both born at twenty-six weeks because my mom went into premature labor, which could not be controlled with medicine in the hospital. Due to being born early, I […]

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Teens Take Charge – Olivia’s Story

My name is Olivia, I’m 14 and have been living with hydrocephalus since birth. I was born at only 29 weeks, which caused a bilateral grade II intra-ventricular hemorrhages (also known as brain bleeds), which developed post hemorrhagic hydrocephalus (excess spinal fluid in the brain). I underwent surgery to receive my first VP shunt at 10 […]

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Hydrocephalus…It’s a Real Headache

By Tom Smith, Adult Services & Outreach Coordinator Recently, we posed this question on Facebook ‘What does hydrocephalus mean to you?’ We received scores of answers, all of them great, many of them poignant. One of them was: “Headaches – and I wonder when they might be a serious problem.” Headaches have a very special […]

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You’re Not Alone

By Jennifer Bechard Imagine how a 10 year old would feel lying in a hospital bed not knowing what is going on or where to turn to for support. With too many questions and not enough answers, a condition such as hydrocephalus can take an emotional and physical toll on any individual, especially a child. […]

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