Hydrocephalus is characterized by walking difficulty, trouble with bladder control, and dementia.

After college, raising a family, and building a successful business, Susan and Rick Sontag were living normal lives until things took an unexpected turn. One morning in 1994, Susan awoke with a serious headache. She was confused and unable to remember simple things. After a series of tests, Susan was diagnosed with terminal brain cancer. In an attempt to save her life, Susan underwent an experimental treatment. Miraculously, she survived. As a result of their experience, Susan and Rick started The Sontag Foundation, which has given over $40 million to support brain tumor research and other worthy causes.

But Susan’s miraculous victory appeared to have come at a high personal cost. Over the years following her treatment, she developed increasing difficulty walking and eventually required the use of canes and wheelchairs. Although she lost much of her short-term memory at the time the brain tumor was discovered, her family, friends, and doctors noticed a continuing decline in her other cognitive skills. Everyone assumed that her symptoms were side-effects of her brain tumor treatment and that nothing more could be done.

That was until a January 2013 scientific retreat, sponsored by The Sontag Foundation. Rick and Susan sat next to Dr. Mark Johnson, a Brigham and Women’s Hospital brain tumor neurosurgeon and scientist whose research had been supported by the Sontag Foundation nearly ten years earlier. Dr. Johnson too had observed Susan’s slow decline over the years; however, at the scientific retreat she seemed more affected than ever. Dr. Johnson recognized a pattern in her symptoms and asked Rick if she had ever been screened for a common but little known disorder called normal pressure hydrocephalus (NPH). She had not.

NPH is a chronic neurological disorder that usually occurs in older adults and is characterized by walking difficulty, trouble with bladder control, and dementia. Because these symptoms often arise during aging and are seen in other disorders, NPH is often undiagnosed or misdiagnosed as Alzheimer’s or Parkinson’s disease. Dementia afflicts more than seven million people in the United States, and medical professionals estimate that between 5 and 10 percent of them actually have undiagnosed NPH. Moreover, the number of Americans living with NPH is expected to approach one million over the next 30 years as the Baby Boom generation ages.

“Most patients live with the debilitating symptoms of NPH for many years before they are properly diagnosed,” says Dr. Johnson, who leads the Brigham’s Adult Hydrocephalus Program, which the Sontags have helped to establish. “Frequently, patients and their caregivers attribute the symptoms to some other disease – Alzheimer’s, Parkinson’s, or just old age. Unlike these other disorders, however, a relatively simple surgical procedure to place a shunt, which drains the excess brain fluid, can effectively relieve the symptoms of NPH, sometimes dramatically.”

In Susan’s case, the improvement is quite noticeable. In February 2013, she underwent a test procedure to drain her brain fluid on a temporary basis. When she arrived in Dr. Johnson’s office, she was in a wheelchair because she could only walk short distances, even with assistance. Within 3 days after the test procedure, she was able to stand from a chair and walk briskly down the hallway on her own. Her thinking also had improved. After the successful test, Dr. Johnson performed the shunt surgery to make the changes permanent.

As a result of Susan’s latest victory, the Sontags have given $1 million in seed grant funds to Brigham and Women’s Hospital to establish the Adult Hydrocephalus Program, the only one of its kind in New England. The program will improve the understanding, diagnosis, and treatment of NPH through advances in clinical care, public education, and groundbreaking research.

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