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Susan and Rick Sontag's generosity has helped to launch BWH's new Adult Hydrocephalus Program.
After college, raising a family and building a successful business, Susan and Rick Sontag were living a happy life. But when Susan turned 51, she was diagnosed with terminal brain cancer.
Miraculously, she survived and is alive today. But Susan's victory appeared to have come at a high personal cost. In the years following her treatment, she developed increasing difficulty walking and eventually required the use of canes and wheelchairs. And although she lost much of her short-term memory at the time the brain tumor was discovered, a continuing decline in her other cognitive skills was noticeable. Everyone assumed that her symptoms were side effects of her brain tumor treatment and that nothing more could be done.
That was until a scientific retreat sponsored by The Sontag Foundation. Rick and Susan sat next to BWH neurosurgeon Mark Johnson, MD, PhD, a former recipient of a brain tumor research grant from the foundation. He too had observed Susan's slow decline. Johnson recognized a pattern in her symptoms and asked Rick if she had ever been screened for the common but little-known disorder "normal pressure hydrocephalus," or NPH. She had not.
"We assumed it was the result of all she had been through," said Rick, of his wife's functional decline. "The diagnosis and subsequent treatment of NPH have begun to give us more normal lives. Now, we want to do the same for others."
NPH is thought to be caused by an excess buildup of liquid that normally circulates throughout the brain and spinal cord. It is more common among older adults, and due to its symptoms of cognitive decline, it is often mistaken for Alzheimer's or Parkinson's disease. It is believed that more than 375,000 Americans have undiagnosed NPH, with the number expected to exceed 1 million as baby boomers continue to age.
In Susan's case, the improvement following treatment for NPH was quite noticeable. Within three days of the test procedure, Susan was able to stand from a chair and walk briskly down the hallway on her own. Her thinking had also improved. "I could see the old Susan from seven or eight years ago re-emerging before my eyes," Johnson said. After the successful test, Johnson performed the shunt surgery, which drains the excess brain fluid, to make the changes permanent. Susan continues to improve.
"I think there are real reasons why this all came together in the way it did," said Rick. "We've experienced the devastating impact of a disease that is not well understood, and we want to help others facing a similar struggle."
That help is the Sontags' $1 million gift to BWH to establish a new center called the Adult Hydrocephalus Program. The only center 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 ground-breaking research.
Johnson believes that many people could benefit from proper diagnosis of NPH.
"Frequently, patients and their caregivers attribute the symptoms to some other disease or simply old age," he said. "Unlike these other disorders, however, a relatively simple surgical procedure can effectively relieve the symptoms of NPH, sometimes dramatically."
Learn more about the Adult Hydrocephalus Program at BWH.