50 years after his father first recognized and treated normal pressure hydrocephalus, Dr. Carlos Hakim is partnering with the Hydrocephalus Association and other clinicians on a mission to advocate for screening and proper diagnosis of the estimated 375,000 Americans suffering with this treatable form of dementia.
Bethesda, MD | March 11, 2014
This year marks the 50th anniversary of the recognition of normal pressure hydrocephalus (NPH) as a distinct medical syndrome. Despite the discovery 5 decades ago, it is estimated that 5-10% of the 35.6 million people worldwide diagnosed with dementia actually have NPH, leaving close to 1.8 million individuals suffering with a condition that could be successfully treated. Dr. Carlos Hakim, a biomedical engineer and neuroscientist and the son of the late Dr. Salomón Hakim, the man who first defined the condition, questions why, when there exists a means to diagnose and treatment options.
“My father dedicated his life to understanding, treating, and then educating the medical and patient community about normal pressure hydrocephalus. I am perplexed that in the past 50 years there has not been more progress made in building awareness. There are people unnecessarily living in nursing homes or assisted living facilities with a dementia diagnosis who could benefit from a simple screening and treatment that would restore them to a productive lifestyle,” stated Hakim.
Often referred to as a treatable form of dementia, NPH is actually a chronic neurological disorder where an accumulation of cerebrospinal fluid (CSF) causes the fluid-filled ventricles in the brain to gradually enlarge, sometimes with little or no increase in intracranial pressure. While NPH can occur in adults of any age, it disproportionately appears in older individuals, and is accompanied by some or all of a triad of symptoms that include gait disturbances, dementia, and impaired bladder control. The current treatment for NPH is the insertion of a shunt into the brain that diverts fluid from the brain to another part of the body to be absorbed. Left untreated, NPH can cause an individual to degenerate into what appears to be dementia and is often misdiagnosed as Alzheimer’s or Parkinson’s diseases, or remains undiagnosed because symptoms are thought to be part of the aging process. This degeneration puts an incredible burden on family caregivers and may lead to unnecessary institutionalization when patients who could continue normal activities of daily living if they are viable candidates for treatment, are placed in assisted living facilities or nursing homes.
With the large “baby boomer” population reaching the age where the NPH incidence increases, this should be of particular concern. Research suggests that treating hydrocephalus in the elderly population would reduce U.S. health care expenditures by approximately $200 million over five years. More significantly, particularly to the individual and their families, successful treatment can mean returning to an active lifestyle. Sufferers, often stuck in wheelchairs for years, get up and walk after diagnosis and successful shunting. They literally get their lives back. Even though thousands of patients are treated successfully each year, many thousands more remain undiagnosed or misdiagnosed.
In the 1960s, when Dr. Hakim described his discovery in the foreword to the English translation of his 1964 thesis, a treatable form of neurodegeneration or dementia was a controversial claim. Most clinicians did not believe that such conditions could be reversed surgically by diverting excess cerebrospinal fluid in the brains of affected patients using a shunt. Even after many decades of clinical and scientific study on this subject, Dr. Hakim’s story remains largely untold. Dr. Carlos Hakim and his two brothers, Dr. Fernando Hakim and Dr. Rodolfo Hakim, both neurosurgeons like their father, are carrying on their father’s work.
“My brothers and I, together with the Hydrocephalus Association (HA) and other clinicians, are determined to carry forth my father’s legacy and help these people who are otherwise locked in the oblivion of dementia,” stated Dr. Hakim.
In commemoration of the definition of normal pressure hydrocephalus a half century ago, Dr. Carlos Hakim, HA and other clinicians, hope to mark this milestone year by raising awareness among the general public for the proper screening and diagnosis of NPH. They will also advocate for the research funding to continue advancing the understanding of the causes and possible prevention of the condition. This year will also recognize the contributions of Dr. Salomón Hakim to the medical and patient communities, on behalf of the tens of thousands of Americans who have benefited from the practitioner knowledge of and treatment for this condition that he shared.
For more information on normal pressure hydrocephalus or access to Dr. Hakim’s initial thesis paper, please contact the Hydrocephalus Association at firstname.lastname@example.org.