Imagine waking up one morning, in the prime of your life, only to realize that half of your face is paralyzed! Several days later, shingles appear on the side of your head, and a relentless pounding pain behind your ear destabilizes your very consciousness. You can’t smile on that side, one eye doesn’t blink and water runs out of your mouth when you try to drink. This is what happened to Nancy 36 years ago, fresh out of graduate school, newly married and embarking on a career as a scientific researcher. Doctors gave her steroids and told her to come back in 6 months to see if it would get better. We take our smiles for granted until they are gone. She was devastated. Fortunately, with the help of supportive family, friends and coworkers, and despite her crooked smile and an eye that doesn’t blink, she was able to continue her studies, start a family and progress through a successful career as a scientist at some of the top institutions in the country.  

After retiring, Nancy learned that she had contracted Ramsay Hunt Syndrome (RHS) so many years ago. Anti-viral medicines might have helped her recovery. Additional treatments such as nerve transplantation, facial Botox and massage were available. She realized that she had been misdiagnosed and missed out on therapies that might have changed her life. She also learned that there continue to be many RHS patients who are still being misdiagnosed or denied care due to the rare nature of the disease. There was no place for patients to go for support or information. Thus, she contacted Dr. Matt Miller at the UNC Facial Nerve Center in Chapel Hill, NC. Together they formed the Ramsay Hunt Syndrome Foundation, recruited top clinicians to the board and set about to raise awareness of Ramsay Hunt Syndrome in the medical community as well as to provide support and information to patients. The foundation’s hope is that when the next RHS patient wakes up to facial paralysis, they will get immediate and thorough treatment and support.