{"id":6878,"date":"2021-02-25T15:21:43","date_gmt":"2021-02-25T21:21:43","guid":{"rendered":"https:\/\/ibio.org\/?p=6878"},"modified":"2021-02-25T15:25:37","modified_gmt":"2021-02-25T21:25:37","slug":"national-rare-disease-day-recognizing-neurogenic-orthostatic-hypotension","status":"publish","type":"post","link":"https:\/\/ibio.org\/national-rare-disease-day-recognizing-neurogenic-orthostatic-hypotension\/","title":{"rendered":"National Rare Disease Day: Recognizing Neurogenic Orthostatic Hypotension"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Each\u00a0 year on February 28, the rare disease community joins together on Rare Disease Day to raise awareness of\u00a0 as many as 7,000 rare diseases affecting an estimated 25-30 million Americans. It is a day where the\u00a0 collective voices of patients and families impacted by rare diseases advocate for more research and better\u00a0 access to diagnosis and treatment. In observance of Rare Disease Day, Lundbeck looks to shine a\u00a0 spotlight on a rare condition called neurogenic orthostatic hypotension (nOH).\u00a0\u00a0<\/span><\/p>\n<p><b><i>What is nOH?\u00a0<\/i><\/b><\/p>\n<p><span style=\"font-weight: 400;\">nOH is a condition that causes abnormally low blood pressure after standing in people with nervous\u00a0 system disorders. Because this condition cause damage to the nervous system, the body may not release\u00a0 enough of a chemical called norepinephrine, which helps to keep blood pressure from dropping too low.\u00a0 Without enough norepinephrine, blood pressure remains low after standing, which may result in\u00a0 symptoms like dizziness, lightheadedness, blurry vision, or fatigue.\u00a0\u00a0<\/span><\/p>\n<p><b><i>Who Experiences nOH?\u00a0\u00a0<\/i><\/b><\/p>\n<p><span style=\"font-weight: 400;\">Those who are living with neurodegenerative conditions, like Parkinson\u2019s disease (PD), multiple system\u00a0 atrophy (MSA) and pure autonomic failure (PAF), can be at risk for this condition. Although considered rare, symptomatic nOH is estimated to affect 20% of patients who have PD, 80% of those living with\u00a0 MSA and nearly 100% of PAF patients.\u00a0<\/span><\/p>\n<p><b><i>Understanding the Symptoms of nOH.\u00a0\u00a0<\/i><\/b><\/p>\n<p><span style=\"font-weight: 400;\">There are a variety of symptoms associated with nOH. Some of those are:<\/span><\/p>\n<ul>\n<li><span style=\"font-weight: 400;\">dizziness\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\">lightheadedness\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\">blurred vision\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\">nausea\u00a0<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">Symptoms of nOH can be non-specific so its important people don\u2019t attribute their symptoms to their underlining neurodegenerative disorder, rather than a separate and manageable condition.\u00a0\u00a0<\/span><\/p>\n<p><b><i>How is nOH Diagnosed?\u00a0\u00a0<\/i><\/b><\/p>\n<p><span style=\"font-weight: 400;\">Like many of those living with a rare disease, patients with nOH may face a long path to diagnosis. nOH\u00a0 should be diagnosed by a physician and usually consists of taking a patient\u2019s blood pressure readings\u00a0 while standing and sitting or during a tilt-table test, along with monitoring heart rate.\u00a0\u00a0<\/span><\/p>\n<p><b><i>Three Tips for Anyone Who May Think They Have nOH:\u00a0\u00a0<\/i><\/b><\/p>\n<p><span style=\"font-weight: 400;\">If you or a loved one who is living with a neurodegenerative condition is experiencing symptoms of\u00a0 nOH, here are three tips to help you take action and begin a discussion with your physician:\u00a0\u00a0<\/span><\/p>\n<ul>\n<li><b> Get to Know Your Symptoms: <\/b><span style=\"font-weight: 400;\">Patients and family members of those living with PD, MSA or PAF should monitor for symptoms of lightheadedness, dizziness or blurred vision upon standing, as these may be potential signs of nOH. A symptom checker is available at <\/span><a href=\"http:\/\/www.nohmatters.com\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">n<\/span><span style=\"font-weight: 400;\">ohmatters.com<\/span><\/a><span style=\"font-weight: 400;\">.\u00a0<\/span><\/li>\n<li><b> Keep Track of Your Symptoms: <\/b><span style=\"font-weight: 400;\">Capturing the details of what you are experiencing as it happens will help you and your physician recognize potential patterns. A symptom tracker can be found at <\/span><a href=\"http:\/\/www.nohmatters.com\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">n<\/span><span style=\"font-weight: 400;\">ohmatters.com<\/span><\/a><span style=\"font-weight: 400;\">.\u00a0<\/span><\/li>\n<li><b> Reach Out to Your Doctor: <\/b><span style=\"font-weight: 400;\">It is important that you discuss everything, no matter how minor it may seem, with your healthcare team. A doctor discussion guide is also available at <\/span><a href=\"http:\/\/www.nohmatters.com\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">n<\/span><span style=\"font-weight: 400;\">ohmatters.com<\/span><\/a> <span style=\"font-weight: 400;\">to help you begin the conversation.\u00a0<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">For more information and resources about nOH and management specifically, visit <\/span><a href=\"http:\/\/www.nohmatters.com\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">w<\/span><span style=\"font-weight: 400;\">ww.nohmatters.com<\/span><\/a><span style=\"font-weight: 400;\">.\u00a0 <\/span><\/p>\n<p><b>R<\/b><b>eferences<\/b><b>\u00a0<\/b><\/p>\n<ol>\n<li><span style=\"font-weight: 400;\"> Rarediseases.info.nih.gov. 2020. Faqs About Rare Diseases | Genetic And Rare Diseases\u00a0 Information Center (GARD) &#8211; An NCATS Program. Avaliable at: https:\/\/\u00a0<\/span><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">rarediseases.info.nih.gov\/diseases\/pages\/31\/faqs-about-rare-diseases. Accessed December 20,\u00a0 2020.\u00a0<\/span><\/p>\n<ol start=\"2\">\n<li><span style=\"font-weight: 400;\"> Freeman R, Wieling W, Axelrod FB, et al. Consensus statement on the definition of orthostatic\u00a0 hypotension, neurally mediated syncope and the postural tachycardia syndrome. Clin Auton Res.\u00a0 2011;21(2):69-72.\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\"> Metzler M, Duerr S, Granata R, Krismer F, Robertson D, Wenning GK. Neurogenic orthostatic\u00a0 hypotension: pathophysiology, evaluation, and management. J Neurol. 2013;260(9):2212-2219. 4. Perlmuter LC, Sarda G, Casavant V, et al. A review of orthostatic blood pressure regulation and\u00a0 its association with mood and cognition. Clin Auton Res. 2012;22(2):99-107.\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\"> Goldstein DS, Sharabi Y. Neurogenic orthostatic hypotension: a pathophysiological approach.\u00a0 Circulation. 2009;119(1):139-146.\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\"> Ha AD, Brown CH, York MK, Jankovic J. The prevalence of symptomatic orthostatic\u00a0 hypotension in patients with Parkinson&#8217;s disease and atypical parkinsonism. Parkinsonism Relat\u00a0 Disord. 2011;17(8):625-628.\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\"> Freeman R. Clinical practice. Neurogenic orthostatic hypotension. N Engl J Med.\u00a0 2008;358(6):615-624.\u00a0<\/span><\/li>\n<li><span style=\"font-weight: 400;\"> Kaufmann H, Palma JA. Neurogenic orthostatic hypotension: the very basics. Clin Auton Res.\u00a0 2017;27(Suppl 1):39-43.\u00a0<\/span><\/li>\n<\/ol>\n<p><span style=\"font-weight: 400;\">\u00a92021 Lundbeck. All rights reserved. UBR-D-100869 <\/span><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. Each\u00a0 year on February 28, the rare disease community joins together on Rare Disease Day to raise awareness of\u00a0 as many as 7,000 rare diseases affecting an estimated 25-30 million Americans. It is a day where the\u00a0 [&hellip;]<\/p>\n","protected":false},"author":18,"featured_media":6879,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[447],"tags":[],"class_list":["post-6878","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rdfeature"],"_links":{"self":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts\/6878","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/users\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/comments?post=6878"}],"version-history":[{"count":0,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/posts\/6878\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/media\/6879"}],"wp:attachment":[{"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/media?parent=6878"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/categories?post=6878"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ibio.org\/wp-json\/wp\/v2\/tags?post=6878"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}