The story of Noel
Persistent Postural Perceptual Dizziness (PPPD) might not be rare. It’s too early to tell. PPPD was just added to the World Health Organization’s International Classification of Diseases in 2017. Subsequently very little is know about PPPD and very few people have been diagnosed. That being said, we do know that developing PPPD, or most vestibular disorders for that matter, under the age of 18 is exceptionally rare. So being born with an undiagnosed congenital vestibular disorder followed by developing PPPD at age 14 has made my life very difficult. There simply aren’t pediatric vestibular specialists. Adult hospitals and doctors refused to treat me and when they agreed they had no idea what to do with me. They still don’t. Because on top of being a pediatric case I have a very newly recognized disease. This combination means that no matter how experienced the doctor I’m out of their expertise.