The Unique Challenges of Adult Hydrocephalus

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dawn mancusoBy Dawn Mancuso

“The difference between children and adults is that they’re shorter – not dumber.”
Mo Willems

Normally, I would agree with Mr. Willems. We adults tend to underestimate the intelligence of the children around us, assuming that our life experiences make us somehow smarter.The Unique Challenges of Adult Hydrocephalus

However, I’ve learned some important lessons in my nine months working here at the Hydrocephalus Association. Children are not just shorter versions of adults. And, the challenges faced by adults are not the same as those faced by our kids. I’m not talking about the general day-to-day challenges we all face, although that argument can easily be made at another time and another place.

What I am referring to is the marked differences between the cases of hydrocephalus adults typically face – especially those with adult-onset hydrocephalus – versus the cases of hydrocephalus faced by children. The impairments associated with adult hydrocephalus – such as gait disturbances, memory loss/dementia, and loss of bladder control in cases of Normal Pressure Hydrocephalus (NPH) – can be just as debilitating and disruptive to everyday living as the impairments associated with any other kind of hydrocephalus.

A complaint that the Hydrocephalus Association (HA) sometimes hears is that we focus too much on pediatric hydrocephalus, and that we don’t give enough attention to the adult forms of the condition.  This perception always saddens me. We here at HA work very hard to serve anyone affected by hydrocephalus, regardless of age.

Over the years, we have developed specialized educational materials for adults, such as our two adult-focused educational books (Hydrocephalus Diagnosed in Young and Middle-Aged Adults and About Normal Pressure Hydrocephalus). We have expanded our web-based resources to include additional literature about adult-onset hydrocephalus. We offered many specialized educational tracks for adults at our recent National Conference on Hydrocephalus. Each day, our staff works with quite a few people who call because they or an adult family member has recently been diagnosed with hydrocephalus, and they didn’t know where else to turn.

As part of our ongoing commitment to adult hydrocephalus, one of our most exciting initiatives this year has been the establishment of a planning task force to develop a specialized clinical research network focusing on adult hydrocephalus.  This research network, which does not yet have a formal name, will be built on the model established by our partner, the pediatric focused Hydrocephalus Clinical Research Network (HCRN) that was founded in 2006.  The work of the HCRN has already started to produce findings that hold much promise for improved treatments for both children and adults.

The adult-focused clinical research network planning task force has already met in person twice this year, and meets via conference call twice a month to move the establishment of the network forward.

The Board of Directors of the Hydrocephalus Association is committed to supporting this very special effort. Staff and volunteer time and resources have been engaged in helping to keep the planning work going. I’m very excited to announce that just a few weeks ago, the Board voted to provide a grant of up to $50,000 to help advance the project and develop the resources for the research data collection effort through the use of a data coordinating center.

HA is proud to be a driving force in undertaking this effort on behalf of all those adults suffering with the challenges presented by hydrocephalus, a condition that could hit any of us at any time. We thank all of you who are so supportive of all of our efforts as we continue in our quest for better treatments and eventually a cure. We couldn’t do it without you!

1 Comments for : The Unique Challenges of Adult Hydrocephalus
    • Tammie Landreth
    • March 26, 2018

    My husband had severe head trauma and became hydracephalic years ago. He is 50 now and is having massive headaches and cognitive problems along with memory. We would like to know if the hydracephalus can mess with emotions. He is blank. Doesnt love me after 27 years, doesnt care about his kids and only wants to be left alone. Are these signs or symptoms? Please help, 27 years is a long time to just throw away.

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