Why should you get involved?
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 the diagnostic process can take anywhere from 10-15 years, and in some cases, even longer.
But it's not always the length of time of the diagnostic journey but the period of time without a diagnosis that 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 education and development 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 impact 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 feelings of frustration and isolation.
How you can get involved in the IHAW Living with IH Project?
Fill in this form https://www.jotform.com/form/240560816913860. It will ask you to:
1. Tell us how old you were when you first started experiencing IH symptoms.
2. Tell us how old you were when you were diagnosed with IH.
3. Share a photo of yourself around the time you first started experiencing symptoms.
4. Share a photo of yourself around the time you were diagnosed with IH.
5. Tell us in approx 180-200 characters (that's only 40-45 words) what life was like prior to diagnosis or how receiving an IH diagnosis made you feel.
Examples: "10 years without a diagnosis was confusing, heartbreaking and too long. No one should have to go without care and treatment for that long" OR
"I went through my teen years not being believed. Receiving an IH diagnosis was bittersweet. I proved all the doubters wrong but IH is a neglected disorder. I'm still fighting for support and effective treatment.” How will your words and images be used?
We will create images like the example below. We will share these on our social media and HA’s website during the IHAW with the hashtags #LivingwithIH and #ThisisIH and encourage you to do so too! If you have any questions, please email ihaweek@gmail.com Learn more about the IHAW and ways you can participate: https://www.hypersomnolenceaustralia.org.au/ihawarenessweek
Living with IH - Share Your Experience Project