Aug. 24, 2015
Posted by Jennifer Huron
A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH), and how to improve patient outcomes.
“Living with a rare condition like nOH affects every part of your daily life,” says Mary Dunkle, Vice President of Educational Initiatives at NORD. “In the case of nOH, a challenge has been that little information existed to help patients and doctors understand that what patients experience is clinically based on a condition that can be diagnosed and treated.”
nOH is a rare disease that occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves, including Parkinson’s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF). Patients with nOH experience a drop in blood pressure upon standing caused by a malfunction in the autonomic nervous system. Patients frequently describe symptoms such as dizziness, lightheadedness, or fainting. They are at an increased risk of injury from falling with no warning and often require round-the-clock care and supervision.
The video features patient testimonials, including one treated at NYU Langone Medical Center, medical expert advice from physicians at Boston Medical Center and Massachusetts General Hospital, and resources from NORD, including NORD’s Patient Assistance Programs.
“The last thing patients should worry about with a life-altering condition like this is how to afford their medication,” says Catherine Blansfield, RN, Vice President of Patient Services at NORD.
The video is the first in a new series that NORD is launching to educate patients, doctors and the medical community about rare diseases as part of the organization’s mission to improve quality of life for patients and families affected by rare diseases.
“Many patients with rare diseases wait 5 years or longer to receive an accurate diagnosis, which can greatly affect their prognosis,” said Dunkle. “We want to educate patients and doctors about rare diseases to improve patient outcomes.”
Watch the full video below.