A Hope and a Prayer: The National Institute of Health Undiagnosed Diseases Program
While the television show “House” is a story, apparently we have real life “Dr. House” types at NIH from which those in dire need receive care and in 15 percent of the cases, a diagnosis and course of treatment.
I enjoy the television show "House" on Fox but do not get to watch it as frequently as I would like. The main character Dr. House is played brilliantly by British Actor Hugh Laurie and is a moody and disagreeable genius who treats individuals who are seriously ill and have no known diagnosis or cure for the illness that afflicts them in the show. Dr. House is everything one might want to be; a genius, a healer who, despite being flawed as a person, is able to overcomes this to cure everyone that comes before him. I mention this show because recently a very dear friend Cris Carey explained to me how his family was in need of a "Dr. House" to assist his niece.
Cris is a member of the Clarkstown Planning board; he gives generously of his time to various not-for-profits in quiet service on boards of several and has helped a lot of other people by his service to these institutions. Cris is a good person and despite helping many, he and his family is in need of help and a "Dr. House" to assist his niece Katherine Blackmar.
It is really a compelling story that demonstrates that hopefully we have a Dr. House in Washington who can really mimic the show and help people. Katherine—or "Katie" as her family and friends refer to her—is a very talented 23-year-old woman who resides in North Carolina. She did remarkably well in high school and college earning a 3.7 average through the University of North Carolina and even gaining acceptance into Yale University graduate school. Unfortunately, Katie has suffered terribly from an undiagnosed illness where she has never gone more than 16 days out of the hospital during the past two years. Her condition to the point where she is regularly in the intensive care unit in major medical centers several times a month. She has been to UNC Medical Center, Duke University Medical Center and even the Mayo Clinic; yet no diagnosis has been found for her illness.
Katie's doctors told her family about a unique and exclusive medical program run by the National Institute of Health (NIH) in Washington D.C. that is so exclusive only 50 patients a year are admitted. This program leverages all of the talent available through the NIH and brings it to bear to help the helpless. Apparently it has several real live "Dr. House"-type professionals and teams of doctors who are the very best of the best in terms of medical diagnosis our country has to offer. Those who are enrolled receive a diagnosis 15 percent of the time—while not anywhere near the equivalent to the show, at least it is something in real life to hope and pray.
Why do I write of this very sad case—a woman from North Carolina who is facing a life and death struggle? I write because it is something none of us would ever want to experience; I write because it sheds light on a difficult situation and to offer some hope that a diagnosis and treatment may be found for a talented young woman with a life yet to live. I write also to let you know of the remarkable actions a few public servants undertook to give Katie Blackmar a chance at life.
You see the trips to the ICU were becoming weekly visits and a life seemed to be fading away; all hope seemed lost, or was it? Enter Rockland County Legislator John Murphy who, at the behest of the Carey and Blackmar families, contacted United States Senator Chuck Schumer. Through Senator Schumer and his medical liaison, Meghan Taira, calls were made, an application completed and remarkably Katie was accepted as one of the 50 within a few short weeks and enrolled in this exclusive program. She has at least a reprieve and, as one of the 50 that are enrolled, the hope that the best of the best will actually turn out to be "Dr. House" and find a diagnosis so she can find a cure.
According to her Uncle Cris Carey of Bardonia,
"This is the last hope we have. Her doctors need a diagnosis. It has been years and we have sought answers everywhere—we were without hope. Now we have some (hope) that during the next few weeks, a diagnosis will be found at the NIH undiagnosed diseases program."
"Frankly, it is all we have left—Katie has been everywhere and nobody knows what is wrong and she is failing; we need a diagnosis so she can be treated. While we had no hope a few weeks ago at least we know we have some now. We were told on average, 15 percent of those admitted to the NIH program receive a diagnosis, which means they get a course of action to treat the disease they suffer from. Katie is so talented and such a good person; she has a wonderful life ahead of her—we just hope that the NIH can find a diagnosis so she can be treated and live a life that will allow her talents to shine."
While the television show "House" is a story, apparently we have real-life "Dr. House"-types at NIH from which those in dire need receive care and in 15 percent of the cases a diagnosis and course of treatment. Katie entered this exclusive program on Nov. 14. She will stay for several weeks and the foremost research scientists and medical professionals will evaluate her and perform tests and meet to discuss her case just like on the show. Hopefully, in that time she will learn what afflicts her so that a course of treatment can be designed and performed to bring her to full health.
So this week—as we begin to prepare for Thanksgiving—the Carey and Blackmar families are hoping and praying for good news—a diagnosis. They are also saying a prayer of Thanks for public servants like Legislator Murphy, Senator Schumer and Meghan Taira who quickly and quietly stepped up to help Katie Blackmar. Let us also hope and pray that the NIH will fulfill the desires of the Blackmar and Carey families; namely that Dr. House really does exist after all and life may imitate art and a young woman without hope will finally have some, along with a diagnosis and course of treatment.