In late March 2021, the Hypersomnia Foundation and biopharmaceutical company Jazz Pharmaceuticals, Inc. (“Jazz”) partnered up to launch the “I Have IH” campaign. The campaign is designed to raise awareness and education around idiopathic hypersomnia (IH), a rare sleep disorder. Since IH is typically under-diagnosed and lacks a variety of treatment options, the campaign also hopes to empower patients to speak to their doctors or healthcare providers about their symptoms. Learn more about the campaign and resources in this media-laden press release.
“I Have IH” Campaign
At the start of their campaign, the partnership utilized Toluna Analytics to run a virtual survey. Overall, the survey was designed to understand how much doctors and healthcare providers knew about idiopathic hypersomnia, its diagnosis, and its care. 305 doctors took part in the survey. Some findings included:
- 110 doctors (36%) felt that other healthcare providers had adequate knowledge about IH. However, 275 doctors (90%) stated that more education and awareness were needed within the healthcare realm.
- 174 doctors (57%) stated that they had previously misdiagnosed IH as something else. 265 doctors (87%) shared that the condition is difficult to diagnose. For this reason, it can take up to 10+ years for patients to receive the correct diagnosis.
- Unfortunately, this is not new in the rare disease community. In many cases, patients with rare diseases wait an average of 5-7 years for an accurate diagnosis.
- Most doctors believe that the most common misdiagnosis for IH is depression and anxiety.
- A large majority of those surveyed believe that IH should have more recognition and that its impact on patients is severely underestimated.
Moving forward, the Hypersomnia Foundation and Jazz will also seek to interview patients and caregivers to develop a more comprehensive idea of how IH affects them.
Idiopathic Hypersomnia (IH)
Idiopathic hypersomnia (IH) is a rare sleep disorder which is typically characterized by excessive daytime sleepiness. As its name (“idiopathic”) suggests, there is no known cause for IH. The condition differs from narcolepsy because it occurs without other medical problems or sleep disruptions. Because of this, many doctors and researchers believe it is a neurological disorder. Some preliminary research suggests that brain hypersensitivity or noradrenergic neuronal death may cause IH. Those with IH do not experience restorative nighttime sleep or naps, which leave them feeling exhausted and unrefreshed. Generally, symptoms develop when one is a teen or young adult. These include:
- Chronic and excessive daytime sleepiness
- Note: This sleepiness often interrupts one’s daily routine. It prevents people from feeling alert during the day and may cause unplanned sleeping or drowsiness episodes.
- Anxiety and depression
- Appetite loss
- Confusion and irritation
- Difficulty waking up