{"id":110227,"date":"2017-04-26T14:15:49","date_gmt":"2017-04-26T18:15:49","guid":{"rendered":"https:\/\/www.theparisreview.org\/blog\/?p=110227"},"modified":"2017-04-28T12:30:48","modified_gmt":"2017-04-28T16:30:48","slug":"survivor","status":"publish","type":"post","link":"https:\/\/www.theparisreview.org\/blog\/2017\/04\/26\/survivor\/","title":{"rendered":"Survivor"},"content":{"rendered":"<p><i>A hypochondriac\u2019s guide to rare diseases.<\/i><\/p>\n<p><a href=\"https:\/\/www.theparisreview.org\/blog\/wp-content\/uploads\/2017\/04\/bandages.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-110316\" src=\"https:\/\/www.theparisreview.org\/blog\/wp-content\/uploads\/2017\/04\/bandages.jpg\" alt=\"\" width=\"681\" height=\"507\" srcset=\"https:\/\/www.theparisreview.org\/blog\/wp-content\/uploads\/2017\/04\/bandages.jpg 681w, https:\/\/www.theparisreview.org\/blog\/wp-content\/uploads\/2017\/04\/bandages-300x223.jpg 300w\" sizes=\"auto, (min-width: 62.5em) 67vw, 100vw\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>I recently made a wrong turn out of the parking lot of the Danbury Fair Mall, where I\u2019d indulged in a bag of Auntie Anne\u2019s pretzel nuggets and a pair of cheap earrings at Claire\u2019s. Bemoaning my love for this soulless crap\u2014and not paying attention to my route\u2014I found myself at the entrance to <small>NORD<\/small>, the National Organization for\u00a0Rare Disorders.\u00a0<!--more--><\/p>\n<p>I\u2019m a hypochondriac. I\u2019ve also been a state-licensed EMT for nineteen years. EMTs are taught not to diagnose, but in my case these are wasted words. I keep my \u201cfindings\u201d to myself, but my vast body of knowledge, gleaned from TV shows like <em>House<\/em> and the national tabloids, is far reaching.<\/p>\n<p><small>NORD<\/small> was founded in 1983. It exists for people whose doctors say, \u201cI don\u2019t know what it is, and I don\u2019t know how to treat it.\u201d It\u2019s a serious organization for people lost in the uncharted waters of pharmaceuticals and clueless MDs. There are some seven thousand diseases that the medical establishment has officially deemed \u201crare,\u201d and they affect thirty million people. If you are the only person on the planet with prune-belly syndrome (real) or stiff-person syndrome\u00a0(real), you may have to wait a long time for Big Pharma to get around to you. This is where <small>NORD<\/small> steps in, advocating for your care on a national level.<\/p>\n<p><a href=\"https:\/\/rarediseases.org\/\" target=\"_blank\">On <small>NORD<\/small>\u2019s website<\/a>, you can read about their heroic mission; you can add your name to their roster; you can become a donor or an advocate; or you can, as I did, jump to the long list of baffling medical conditions and stand in awe at all the strange things a human body is capable of doing to itself. Here\u2019s a very short sample of the diseases they list:<\/p>\n<ul>\n<li>Jumping Frenchmen of Maine<\/li>\n<\/ul>\n<ul>\n<li>Blue Ribbon Bleb Nervous Syndrome<\/li>\n<\/ul>\n<ul>\n<li>Cat\u2019s Cry Syndrome<\/li>\n<\/ul>\n<ul>\n<li>Precocious Puberty Syndrome<\/li>\n<\/ul>\n<ul>\n<li>Geographic Tongue<\/li>\n<\/ul>\n<ul>\n<li>Maple Syrup Urine Disease<\/li>\n<\/ul>\n<ul>\n<li>Blue Diaper Syndrome<\/li>\n<\/ul>\n<ul>\n<li>Cat Eye Syndrome<\/li>\n<\/ul>\n<ul>\n<li>Hairy Tongue<\/li>\n<\/ul>\n<ul>\n<li>Floating Harbor Syndrome<\/li>\n<\/ul>\n<p>If, after reading through this long list, you can\u2019t find your problem, you\u2019ll be directed to <small>SWAN<\/small>, a sister organization whose acronym stands for Syndromes Without a Name. I must admit, I find this concept very appealing, in a lost and existential way\u2014it\u2019s like the French Foreign Legion.<\/p>\n<p>So you don\u2019t think I\u2019m a heartless voyeur, let me share with you my brush with rare diseases. Many years ago, asleep in bed, I thought an atomic bomb had gone off in my head. It shook me so badly that I ran to my doctor\u2019s office as soon as they opened. My doctor diagnosed it, correctly, as exploding-head disease, a benign and fairly common condition that no one knows anything about\u2014except that one\u2019s head does not really explode. It just feels like it has.<\/p>\n<p>Then there was my brave fight with Beshams disease. Whenever I had my blood pressure taken, the cuff really hurt as the doctor inflated it. It wasn\u2019t just a tender pain\u2014it hurt so much that I often ripped the cuff straight off my arm.<\/p>\n<p>After going through a series of exhaustive medical tests that showed there was absolutely nothing wrong with me, my doctor said he had researched it, and I had Beshams: a very rare, quite uncomfortable yet not-life-threatening condition.<\/p>\n<p>When I got home, the first thing I did was go online and order a silver-link medical alert bracelet with my \u201ccondition\u201d engraved on it. Then I ordered an around-the-neck dog-tag version. Then I got a wallet ID card stating that I suffered from this debilitating ailment.<\/p>\n<p>I was proud of my self-care\u2014until time passed and I went for my yearly physical. The blood pressure cuff no longer hurt. I told my doctor about this miracle, and he told me that there was nothing wrong with me in the first place. He\u2019d made up Beshams in the same way that doctors used to give sugar pills as a placebo. He knew I wouldn\u2019t leave it alone until I had a diagnosis with a name.<\/p>\n<p>I was both relieved and slightly angry. Flaunting my medical bracelet had made me feel special, and now I was merely another dupe of the medical bureaucracy. Looking at the NORD site, I\u2019m overwhelmed with gratitude that I am not sick. I\u2019m also thankful that I didn\u2019t try to fit \u201cJumping Frenchmen of Maine Disease\u201d on my bracelet\u2014which I still have, if you\u2019re curious. I wear it from time to time when I\u2019m feeling down.<\/p>\n<p>&nbsp;<\/p>\n<p><em>Jane Stern is the author of more than forty books, including\u00a0<\/em>Ambulance Girl: How I Saved Myself by Becoming an EMT.\u00a0<em>She is the canine editor of\u00a0<\/em>Departures<em> and one of the<\/em> Daily\u2019s<em> correspondents.<\/em>\u00a0<em>With Michael Stern, she coauthored the popular\u00a0<\/em>Roadfood\u00a0<em>guidebook\u00a0<\/em><em>ser<wbr \/>ies. The Jane and Michael Stern Collection,\u00a0<a href=\"http:\/\/newsdesk.si.edu\/releases\/smithsonian-collects-roadfood-series-authors\" target=\"_blank\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&amp;q=http:\/\/newsdesk.si.edu\/releases\/smithsonian-collects-roadfood-series-authors&amp;source=gmail&amp;ust=1489171753431000&amp;usg=AFQjCNEve3NMhYTRhkPq7jxD3KotEgmbpA\">comprising forty years\u00a0of their research materials, is on permanent display\u00a0at the Smithsonian<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>There are so many ways to be ill: Cat\u2019s Cry Syndrome, Precocious Puberty Syndrome, Geographic Tongue, Maple Syrup Urine Disease, and more.<\/p>\n","protected":false},"author":906,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[22700],"tags":[28521,28522,25090,17678,12582,28524,28523,28514,20342,28520,8476,28519,28518,28516,28515,28517],"class_list":["post-110227","post","type-post","status-publish","format-standard","hentry","category-our-correspondents","tag-beshams","tag-cats-cry-syndrone","tag-diagnosis","tag-disease","tag-doctors","tag-emt","tag-hairy-tongue","tag-hypochondriac","tag-jane-stern","tag-jumping-frenchmen-of-maine","tag-medicine","tag-national-organization-for-rare-disorders","tag-nord","tag-rare-disorder","tag-rare-disorders","tag-syndrome"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v25.4 (Yoast SEO v25.4) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>A Hypochondriac\u2019s Guide to Rare Diseases<\/title>\n<meta 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