Shed­ding new light on brain dis­eases

Baltimore Sun - - COMMENTARY - By David Brucker David Brucker is chair of the Bal­ti­more, Mary­land Hy­dro­cephalus As­so­ci­a­tion WALK; his email is bal­ti­more­walk@hy­droas­soc.org.

While preg­nant, my mother was in a near -atal car ac­ci­dent, re­sult­ing in her spend­ing her first trimester in a co­matose state and my be­ing di­ag­nosed in vitro with hy­dro­cephalus, a life-al­ter­ing, life-threat­en­ing con­di­tion caused by an ab­nor­mal ac­cu­mu­la­tion of cere­brospinal fluid in the brain, re­sult­ing in pres­sure on the brain.

Any­one at any age may be di­ag­nosed with hy­dro­cephalus. Head in­juries suf­fered by our mil­i­tary mem­bers serv­ing in Iraq and Afghanistan have in­creased the num­bers of those liv­ing with the con­di­tion. Cur­rently, there is no pre­ven­tion for hy­dro­cephalus — and there is no cure. The most com­mon treat­ment is brain surgery to im­plant a med­i­cal de­vice known as a shunt, but a shunt is not a cure. A shunt is only a con­trol, and in chil­dren, it has a fail­ure rate of 50 per­cent within the first two years.

I had my first shunt placed when I was just days old. When I was in eighth grade, my shunt got in­fected and had to be to­tally re­placed. That year, I spent a month in the hos­pi­tal hooked to an ex­ter­nal shunt while doc­tors got rid of the in­fec­tion. Hav­ing a shunt of­ten re­quires those with hy­dro­cephalus to en­dure mul­ti­ple brain surg­eries through­out their life­time — dozens for a sin­gle pa­tient is com­mon, 100-plus is not un­heard of. Yet there have been no sig­nif­i­cant ad­vance­ments in hy­dro­cephalus treat­ment meth­ods since the devel­op­ment of the shunt 60 years ago, and fund­ing for on hy­dro­cephalus re­search lags far be­hind that for other ail­ments. Ac­cord­ing to the Na­tional In­sti­tutes of Health, the U.S. gov­ern­ment spent $6 mil­lion on hy­dro­cephalus re­search in fis­cal year 2015, com­pared with $208 mil­lion for autism and $146 mil­lion for Parkin­son’s dis­ease, even though all three con­di­tions af­fect ap­prox­i­mately the same num­ber of Amer­i­cans.

In the sum­mer of 2013, af­ter be­ing symp­tom-free for al­most 20 years, I had an­other shunt mal­func­tion when my shunt stopped pump­ing fluid out of my head, caus­ing the fluid to back up into my brain. Dur­ing this or­deal, I made sev­eral trips to the E.R., and one hos­pi­tal re­fused to treat my con­di­tion be­cause, at the time, I did not have health in­sur­ance. At the same time, be­cause I was em­ployed, I also did not qual­ify for any kind of gov­ern­ment aid or med­i­cal as­sis­tance. That is when I met and was treated by the out­stand­ing team of med­i­cal pro­fes­sion­als in the Hy­dro­cephalus Clinic at Johns Hop­kins Hos­pi­tal.

The fol­low­ing sum­mer, I again needed two more re­vi­sions. First, when my shunt at­tached to scar tis­sue and tore away from my brain, and again a month later when a tear formed in my ab­dom­i­nal cav­ity. Dur­ing this try­ing time, I have had the op­por­tu­nity to meet some of the most amaz­ing peo­ple. It was through the Hy­dro­cephalus As­so­ci­a­tion that I first re­al­ized I am not alone. Hy­dro­cephalus does not dis­crim­i­nate; it af­fects the young and old, the wealthy and the poor. More than one in every 1,000 ba­bies born in the United States is born with hy­dro­cephalus, and many older adults de­velop nor­mal pres­sure hy­dro­cephalus, which is of­ten mis­taken for Parkin­son’s or Alzheimer’s dis­ease.

I am com­mit­ted to rais­ing aware­ness and funds for im­por­tant re­search into this in­cur­able con­di­tion that af­fects me and over 1,000 Mary­lan­ders. Please join me in call­ing on mem­bers of Congress to sup­port a sig­nif­i­cant ex­pan­sion of the Na­tional In­sti­tutes of Health’s ef­forts at col­lab­o­ra­tive re­search into the in­ci­dence, causes and treat­ments of hy­dro­cephalus. Ad­di­tion­ally, our leg­is­la­tors should be con­tact­ing the Depart­ment of De­fense to gain a bet­ter un­der­stand­ing of how many of our vet­er­ans are now liv­ing with hy­dro­cephalus, to learn how many fed­eral dol­lars are now be­ing used to treat hy­dro­cephalus, and to en­sure that re­search dol­lars fo­cused on trau­matic brain in­juries are avail­able to help de­velop a cure for hy­dro­cephalus.

New ba­sic and clin­i­cal re­search through ei­ther the NIH or the DOD will not only ben­e­fit the 1 mil­lion Amer­i­cans — me in­cluded — al­ready liv­ing with this con­di­tion but could also shed new light into more ef­fec­tive treat­ments for Alzheimer’s, Parkin­son’s and trau­matic brain in­juries. Over the long run, more ef­fec­tive treat­ments will im­prove lives, save tax­payer dol­lars and re­duce the bur­den of un­nec­es­sary high-cost pro­ce­dures on the health care sys­tem.

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