My name is Penny Seume. I was born and raised in Southwest Michigan. One of my favorite parts of this beautiful state is our seasons with fall being my favorite. So many wonderful things to explore and do in Michigan.
I attended Jacksonville University in Florida and was excited to become a pilot. About 18 months into training, I had a wide array of symptoms start to appear. I switched majors and tried to adapt to life with two wobbly feet on the ground. I finished with a bachelor’s degree in aviation management and marketing.
Balance dysfunction and other symptoms were not definitive enough for a diagnosis in the beginning. Life kept moving, I have two wonderful sons and an amazing husband that have seen the daily struggle that I tried very much to hide, as no one seemed to understand or relate. After 16 ½ years of the unknown I was finally diagnosed with bilateral Superior Semicircular Canal Dehiscence, SSCD. I chose to have my right ear operated on in August 2021, barely 3 months after my diagnosis. This condition was only identified in 1998. I was not aware until my diagnosis that the auditory issues I was experiencing were not a regular experience for everyone else around me. I still feel very blessed to finally have an answer and a choice of what to do next. I know that this condition will bring good days and bad days as symptoms can be different daily.
My hope is that this book finds families well and is a relatable way to explain to their little ones what it is like to have a loved one with a condition that is considered “Invisible.” Vestibular disorders are hard to explain, and many conditions can have overlapping symptoms. SSCD is on the list of Rare Diseases. Those of us with this SSCD are all warriors. I believe awareness can lead to more research on ways to help those of us with vestibular disorders to cope with and manage our symptoms better.
*This story is based on my personal experience and how my family navigates daily life together. Nothing in this book should be construed as medical advice for anyone, please consult your own medical provider with questions about your health.
