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Jazz Pharmaceuticals and Hypersomnia Foundation launch campaign to increase understanding and awareness of idiopathic hypersomnia.

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Published:21st Mar 2021
Jazz Pharmaceuticals plc and the Hypersomnia Foundation announced the launch of I Have IH, a disease awareness campaign that aims to increase understanding of the debilitating sleep disorder, idiopathic hypersomnia (IH), and empower patients to recognize their symptoms and improve conversations with their care teams. IH is an often debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness (the inability to stay awake and alert during the day resulting in the irrepressible need to sleep or unplanned lapses into sleep or drowsiness). In addition to excessive daytime sleepiness, symptoms may include severe sleep inertia (prolonged difficulty waking with frequent reentries into sleep, confusion and irritability), a core symptom of IH, as well as prolonged, non-restorative nighttime sleep and long and unrefreshing naps. People living with IH face challenges in managing their condition as healthcare providers underdiagnose IH and there is a current lack of FDA-approved therapies. Jazz and the Hypersomnia Foundation have partnered together on this campaign to help increase awareness and knowledge of IH within the health and larger sleep community and to activate people who have or may have IH to initiate insightful conversations with their physicians. To better determine physicians’ understanding of IH, as part of the campaign, Jazz and the Hypersomnia Foundation conducted a survey of 305 healthcare providers, measuring their perceptions and knowledge of IH.he results from the online survey, conducted by Toluna Analytics, underscore the need for more education and awareness of IH among healthcare providers. Only 36% of physicians reported that they believe other healthcare providers have a sufficient understanding of IH, while more than 90% said that physicians need more education about the sleep disorder.Healthcare providers’ low familiarity with IH may contribute to patients experiencing long delays in receiving an accurate diagnosis—up to 10 to 15 years in some cases. Notably, 87% of the surveyed physicians stated that diagnosing IH can be challenging, with more than half of healthcare providers (57%) reporting that they have personally misdiagnosed IH as another condition before providing the correct diagnosis. Also, a strong majority of providers (86%) reported that they think that patients who have IH are often misdiagnosed with depression and/or anxiety. Given the misdiagnosis and delay in diagnosis, more education and awareness of IH is needed within the sleep community. Nearly all healthcare providers (92%) said they agree that the negative impact of IH is significantly underestimated and that it deserves greater recognition among sleep disorders.. Survey respondents were also asked about their patients’ perceptions, with a strong majority of healthcare providers saying that people living with IH are frustrated with the healthcare community (87%) and their disease management (95%). They also said patients feel their condition is not understood by the general public (66%)..
Condition: Sleeping Disorders/Idiopathic Hypersomnia
Type: drug

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