A 25-year-old diagnosed with a rare neurological disorder that disrupts sleep shared their story on Reddit, revealing the challenges and finding support that renewed their hope.
Living with a Rare Disorder
The individual described their condition as similar to Fatal Familial Insomnia, a rare disorder affecting sleep regulation. Despite sleeping 8 hours a night, they never feel rested, experiencing vivid dreams without the sensation of sleep. The symptoms began nearly four years ago, worsening as their spine condition deteriorated, leading to the current severe state of sleeplessness.
Ongoing Health Challenges
Over the past two years, the condition has caused hallucinations, irritability, mood swings, and extreme exhaustion. Recently, it began affecting their heart and nervous system, resulting in severe dysautonomia and frequent emergency room visits for borderline heart attacks. The 25-year-old rates their quality of life as 1/10, facing constant symptoms and uncertainty about their future.
Support from Social Media
Sharing their story on Reddit’s AMA (Ask Me Anything) forum, the individual received an outpouring of support and curiosity. Many users asked about their daily life and coping strategies, with the 25-year-old explaining the constant exhaustion felt similar to staying awake for days. The overwhelming response from social media provided a sense of motivation and gratitude, as they thanked Reddit for the support.
