Rare Disease Day

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases.

28 February 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.

Idiopathic Hypersomnia is a rare disease and is one of the most misunderstood neurological disorders. Many (including doctors) incorrectly think it “refers to any case of EDS that cannot be explained by another preexisting medical condition or sleep disorder or by lifestyle or behaviour” (sadly that is an actual quote from a “sleep educator”). 


This is not correct; Idiopathic Hypersomnia is a rare neurological sleep disorder. EDS (excessive daytime sleepiness) is just one *symptom* of Idiopathic Hypersomnia.  Idiopathic Hypersomnia (particularly polysymptomatic IH) is characterised by a number of symptoms and clinical features as defined by Bedrich Roth more than 40 years ago. Roth’s years of extensive research that led to his description of idiopathic hypersomnia as a separate disease entity was accepted and included in the first ICSD (International Classification of Sleep Disorders), the Diagnostic Classification of Sleep and Arousal Disorders in 1979. Since then it has been included as a “Rare Disease” on the Genetic and Rare Diseases Information Center (GARD) register and Orphanet 

There are many misperceptions about idiopathic hypersomnia. This combined with inappropriate testing methods has resulted in idiopathic hypersomnia being one of the most misdiagnosed of all neurological sleep disorders. The impact of this as well as the patients that continue to go undiagnosed for these same reasons is immeasurable. Further research is desperately needed in all areas, ie: etiology, epidemiology, the genetic aspects of the disease and to identify biomarkers that will lead to better more appropriate diagnostic tools.

 

 “With research, possibilities are limitless” - Rare Disease Day 2017 slogan


Please show your support for Idiopathic Hypersomnia this Rare Disease Day by changing your Facebook profile pic and cover photo and by sharing these pics. 

"Rare diseases are rare, but 
rare disease patients are numerous" - Orphanet
 

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