A while back we shared the story of ABC 7’s “medical marvel” Manuel Greco. With the help of neurosurgeon Dr. Michael Sisti, Greco continues to beat the odds against a rare genetic disorder called von Hippel-Landau (VHL) disease. To read our post about Greco and Dr. Sisti, click here.
Now we have more exciting news. Thanks to the work of Greco, Dr. Sisti, and doctors and staff members from throughout the organization, Columbia University Medical Center/ New York Presbyterian Hospital has just been named a Comprehensive Clinical Care Center (CCCC) for VHL disease.
The CCCC designation is the highest recognition awarded by the Von Hippel-Lindau Alliance. Only eight centers in the United States have earned the CCCC designation, and everyone here at Columbia’s Department of Neurosurgery is very proud to be part of that group.
To earn the designation of CCCC, a center must excel across many functions. For example, the center must serve patients’ medical and psychological needs, and it must also serve the emotional needs of patients’ families. Living with VHL, and loving someone with VHL, can be difficult at times. CUMC had to demonstrate, as an institution, that it is set up to care for the families of patients with VHL.
On a personal level, this type of care comes naturally to individuals like Dr. Sisti. “One of the great satisfactions of my career has been to get to know people like Manuel and his family, and to be able to make a difference for them,” he says.
Another crucial factor in earning the CCCC designation was demonstrating that Columbia’s expert care teams communicate well across a variety of disciplines. To understand why this is especially important, it helps to know a little about VHL.
People with VHL are predisposed to developing cysts and tumors of the brain, spinal cord, eye, inner ear, and kidney. There is no specific treatment for VHL, but frequent, careful monitoring helps to catch any tumors early.
Therefore, it is important for patients with VHL to have regular exams by specialists in each area–and for these specialists to communicate. When cysts or tumors develop, doctors knowledgeable about the condition and the patient can make the best possible treatment decisions.
According to the VHL Alliance, Columbia’s new status will help a variety of people. For example, doctors from outside CUMC who have little experience with this rare disorder will have somewhere to turn for an expert second opinion. And of course, patients will be able to easily identify that CUMC will be an outstanding facility for them.
As Dr. Sisti says, “I am very pleased that CUMC is now a CCCC. We will continue to provide the same expert support we always have, but now other people living with VHL will know they can come to Columbia University Medical Center / New York Presbyterian Hospital and get the treatment they deserve.”
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