A new video released today by the National Organization for\u00a0Rare 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.<\/p>\n
\u201cLiving with a rare condition like nOH affects every part of your daily life,\u201d says Mary Dunkle, Vice President of Educational Initiatives at NORD. \u201cIn 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.\u201d<\/p>\n
nOH is a rare disease that occurs in people with an existing disease of the brain, spinal cord, or peripheral nerves, including Parkinson\u2019s disease, multiple system atrophy (MSA), and pure autonomic failure (PAF).\u00a0 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.\u00a0 They are at an increased risk of injury from falling with no warning and often require round-the-clock care and supervision.<\/p>\n
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\u2019s Patient Assistance Programs.<\/p>\n
\u201cThe last thing patients should worry about with a life-altering condition like this is how to afford their medication,\u201d says Catherine Blansfield, RN, Vice President of Patient Services at NORD.<\/p>\n
nOH patients may be eligible for financial assistance related to their treatment through a program administered by NORD. For information, contact NORD at\u00a0noh@rarediseases.org<\/a>\u00a0or\u00a0844-827-8743<\/a>.<\/p>\n The video is the first in a\u00a0<\/strong>new series that NORD is launching to educate patients, doctors and the medical community about rare diseases as part of the organization\u2019s mission to improve quality of life for patients and families affected by rare diseases.<\/p>\n \u201cMany patients with rare diseases wait 5 years or longer\u00a0to receive an accurate diagnosis, which can greatly affect their prognosis,\u201d said Dunkle. \u201cWe want to educate patients and doctors about rare diseases to improve patient outcomes.\u201d<\/p>\n Watch the full video below.<\/em><\/p>\n