Increased Awareness Helps Grand Prairie Man Get Correct NPH Diagnosis
Emma Lee and Charlie Trump thought Charlie had the incurable and devastating condition Alzheimer’s, after all that’s what their doctor said. That is until a local news channel did a story on Normal Pressure Hydrocephalus. They recognized the symptoms, got a correct diagnosis and the right treatment. This proves that a little awareness can go a long way.
See the video and read the text of their story.
Go here to see the news story that made all the difference.
Arizona Man’s NPH Treatment Featured in Local Paper
Ed and Betty Stall
Edwin “Ed” Stall had been diagnosed as having Parkinson’s in 2007. His recent correct diagnosis and treatment for Normal Pressure Hydrocephalus (NPH) has put him back in the driver seat. His story is featured in EastValleyTribune.com.
Rhode Island Teen with Hydrocephalus not Allowed to Attend School Dance
Danielle Bacon, a high school senior from Coventry, RI is being prohibited from attending her school’s Winter Ball. Still recovering from recent surgery to treat her hydrocephalus she has been given permission to attend the dance by her doctor. However, school policy says she can only attend the dance if she goes to school on the day of the dance.
Click here, to read the text of the article, or watch the embedded video below.
NPH Featured in CBS’s ‘A Gifted Man’
Last week, Normal Pressure Hydrocephalus (NPH) was featured on the CBS show, ‘A Gifted Man‘.
The episode aired 1/6/12. Click here to see the clip from the episode.
In the News: NJIT Patents New Shunt Design
The Hydrocephalus Association would like to share a press release. Professors at the New Jersey Institute of Technology have patented a new shunt design called the NJIT SmartShunt™. For more, read below:
NJIT receives patent today for new shunt to aid brain-injured patients
NJIT Professor Gordon Thomas and NJIT Research Professor Reginald Farrow, both in the department of physics, and NJIT alumnus Sheng Liu, formerly a doctoral student of both researchers and now an engineer at a biotech company, were awarded a patent today for the NJIT SmartShunt™, a unique device to help patients with brain injuries.
The patent, entitled “No Clog Shunt Using a Compact Fluid Drag Path” (US Patent Number 8,088,091), discloses a device that enables the non-invasive wireless monitoring of both the extremely slow flow of cerebrospinal fluid as well as tiny changes in pressure in a shunt that drains fluid out of the brain. Ordinary shunts are commonly used by patients suffering from severe excess pressure in the brain due to hydrocephalus or brain injury.
“A serious problem with shunts is that they may malfunction or become obstructed. The symptoms include a severe headache, but can be confusing, particularly when patients are small children,” said Thomas. Such uncertainty can lead to the performance of unnecessary and unpleasant surgical procedures or, alternatively, to the postponement of what could be life-saving medical interventions.
“The technology will enable patients and physicians to determine whether cerebrospinal fluid flow is in fact, impaired,” added Farrow. The device will also allow those involved to determine better what medical procedures should be performed
The NJIT SmartShunt™ includes a set of components that are geared toward reducing the potential for shunt obstruction. It is designed to have a lifetime of more than a decade because it needs no internal power. “The SmartShunt™ will also be a valuable new tool for research into what extent diet, motion and medication of patients can improve the pressure and flow of the fluid in the brain,” Thomas added.
The NJIT team has been working on this device since September 2004 with grants from New Jersey Commission on Science and Technology and most recently from the National Institutes of Health.
Ottawa Boy Named Easter Seals Ambassador
The online publication www.mywebtimes.com reported that Payton Hess, a nine year old boy from Ottawa, has been named as the 2012 Ambassador for the Easter Seals of LaSalle and Bureau Counties. Payton lives with conditions, including hydrocephalus, which have resulted in developmental delays.
Click here to read the full article.
Mother and Daughter Interviewed by Practical Caregiver
Recently, Jennifer Jeans and her mother Andrea Jeans were interviewed by Practical Caregiver in Connecticut to help provide insight into caring for someone with a lone-term or chronic illness.
Click here to read the full text of the interview.
Phoenix, AZ WALK Featured in Local Paper
Mike and Mindy Weinstein were featured in the Ahwatukee Foothills News. The article tells Mindy’s story of living with hydrocephalus and of her, and husbands, participation in the November 13th Phoenix, AZ WALK.
Click here to read the full article.
Alabama WALK Featured on Local FOX Affiliate
Nalini Patel, our Birmingham, AL WALK Chair and Steven Morrow, WALK participant and parent of a child with hydrocephalus appeared on their local Fox affiliate to spread the word about hydrocephalus, and about their upcoming WALK.
Watch the clip below.
Boca Raton Youth Interviewed by Local ABC Affiliate
Alex Roger, 10, talks to local ABC affiliate WPBF about hydrocephalus, how he hopes to raise awareness and help to find a cure and how he’s already helped to make a difference.
Click here to either read the text of his interview or watch the video.
Alex was also featured in our blog last year for his lemonade stand. To read that article, please click here.
