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I woke up this morning in a great mood.\u00a0 Something wonderful happened last night.\u00a0 Let\u2019s see, what was it?\u00a0 Oh yeah, that Jeopardy question.\u00a0 Ugh.\u00a0 Then there was the realization that the moment was over, for good.\u00a0 Done and gone.\u00a0 So fleeting fame can be.<\/p>\n
The question was \u201cDiazoxide is used to treat low blood sugar, medically called by this single word.\u201d \u00a0The contestants were stumped but our rare disease community was buzzing.\u00a0 For a couple of hours last night, our global rare disease patient group went nuts on Facebook.\u00a0 We were glowing.\u00a0 We were finally recognized rather than living our lives in the shadows with a disease no one has ever heard of.\u00a0 Something about our rare disease was broadcast into millions of homes– a moment in the sun.\u00a0 We basked in it.<\/p>\n
Here are some of the excited comments on our Facebook pages: \u201cWow,\u201d \u201cThat\u2019s nuts,\u201d \u201cMy dad was watching tonight and saw this.\u201d \u201cI saw that too.\u201d\u00a0 Then there was discussion about the phrasing of the question.\u00a0 \u201cHa-ha!! We all knew it, but technically it is not a well worded question since it really treats hyperinsulinism and hypoglycemia is a symptom, right?!!\u201d \u201cMost of us would have screamed hyperinsulinism before hitting the buzzer.\u201d\u00a0 And then, the pure joy and humor about our orphan drug\u2019s celebrity status. \u201cI am impressed that diazoxide has reached such a height!! LOL!\u201d<\/p>\n
It was really like we had won the lottery.\u00a0 The drug that treats some of us and our children had suddenly become famous, and we felt famous too, by association.\u00a0 In our hyper-focused global online community we constantly talk about diazoxide, but nobody else does.\u00a0 Well maybe some rare disease pharmacists, physicians and nurses do, but that\u2019s it.\u00a0 And now millions had heard of it because of some chance research by a Jeopardy writer.<\/p>\n
So do we just leave it there, let this great moment of recognition slip?\u00a0 No way.\u00a0 Our craving attention is actually not a vanity thing.\u00a0 The disease we all know too well that the rest of the world doesn\u2019t know about is congenital hyperinsulinism. \u00a0\u00a0Increased knowledge of the condition leads to increased timely diagnosis, which leads to fewer people dying or becoming permanently brain damaged from it.\u00a0 <\/em>It really is a matter of life and death and preventing irreversible brain damage.<\/p>\n The millions of viewers from Jeopardy are gone, but maybe because of the happy coincidence of a Jeopardy trivia question hovering on the border of our disease, this little story will be posted or printed somewhere where hundreds, maybe thousands of people will see it.<\/p>\n Here are some facts about the condition treated by diazoxide, the orphan drug made famous by Jeopardy last night:\u00a0\u00a0 It is called congenital hyperinsulinism or HI or CHI, for short.\u00a0 It causes severe and prolonged hypoglycemia.\u00a0 It affects 1 in 25,000 to 50,000 births. It is hard to diagnose in newborns because newborn behavior sometimes is similar to symptoms of hypoglycemia.\u00a0 Also newborn babies often have short-lived hypoglycemia that is not dangerous because nature is protecting typical babies\u2019 brains.\u00a0 Not the case with our HI babies.\u00a0 HI babies are often born very large, but not always.\u00a0 The symptoms of hypoglycemia are:\u00a0 excessive hunger, irritability, sleepiness, shakiness, lethargy, seizures, and blood sugar levels below 70 mg\/dL (3.9 mmol\/l).\u00a0 In some cases HI can be cured with surgery.\u00a0 Medication and\/or surgery help patients to achieve safe blood sugar levels.\u00a0 This is a treatable condition if it is caught before damage ensues.\u00a0 Catch it!\u00a0 For more information, go to our website:\u00a0 www.congenitalhi.org<\/a>.\u00a0 Spread the world.\u00a0 Make our moment of fame last.\u00a0 Oh, and the answer to the Jeopardy question: \u201cHypoglycemia.\u201d<\/p>\n ————<\/p>\n Julie Raskin is the Executive Director of Congenital Hyperinsulinism International.<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" I woke up this morning in a great mood.\u00a0 Something wonderful happened last night.\u00a0 Let\u2019s see, what was it?\u00a0 Oh yeah, that Jeopardy question.\u00a0 Ugh.\u00a0 Then there was the … <\/p>\n