06/02/2024
Welcome to the 12th annual worldwide Idiopathic Hypersomnia Awareness Week!
Raising awareness plays a crucial role in bringing attention to Idiopathic Hypersomnia (IH) and the difficulties faced by individuals living with IH. One of the first challenges for someone with IH is often the length of time to diagnosis. Research has shown that the diagnostic process can take anywhere from 10-15 years and, in some cases, even longer.
It's not always the length of the diagnostic journey but the period of time without a diagnosis which can greatly impact an individual’s life. For instance, a 5 year delay in diagnosis may not seem like a long time, however, it could mean that someone with IH spends most of their teenage years, which are critical educational and developmental years, without validation or access to necessary care and treatment. This delay can have far-reaching consequences.
By increasing awareness of the diagnostic journey, we hope to improve recognition and understanding among healthcare professionals and the general public. We also aim to reduce the emotional and psychological impacts experienced by individuals with IH. The journey to diagnosis can be frustrating, isolating, and challenging for individuals seeking answers about their symptoms. By educating the public about the importance of early detection and the need for appropriate treatments, we can create a more supportive and understanding environment for those affected, reducing the stigma and feelings of frustration and isolation.
The worldwide Idiopathic Hypersomnia Awareness Week was created by someone living with IH, for people living with IH. Michelle Chadwick, founder and executive director of Hypersomnolence Australia (HA) created the IH Awareness Week in 2013. Since it began, the IH Awareness Week has united the IH community across 15 countries, fostering awareness and promoting education about IH on a global scale. Join us!
“Many people with Idiopathic Hypersomnia (IH) can go for years without knowing they are living with a neurological disorder which explains their constant struggle. Without a diagnosis, they lack an explanation for those who criticise them. Then, they get diagnosed, but with a condition which is misunderstood, even by medical professionals. This diagnosis quite often ends up creating more questions than answers. The resulting confusion and lack of support can be incredibly stressful, often leading to depression and anxiety. Witnessing this struggle motivated me to create the Idiopathic Hypersomnia Awareness Week. There simply wasn't a global platform dedicated to raising awareness, amplifying the voices of those living with IH, and fostering a sense of community. Living with IH can be incredibly isolating; I wanted to create something that would both raise awareness and help people feel less alone.”
Learn more about IH: https://bit.ly/IHFACTSHEET
IH Awareness Week: https://bit.ly/IHAWARENESSWEEK
Social Media Toolkit: https://bit.ly/3wdysR2
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