With just one Instagram post, pop star Justin Bieber educated millions of people about Ramsay Hunt syndrome and put the spotlight on rare disorders.
On June 10, Bieber told his 241 million social media followers that his face was partially paralyzed due to Ramsay Hunt syndrome, a rare disorder caused by the same virus that causes chickenpox and shingles. The Grammy winner cancelled several U.S. concerts to rest and recover.
Google Trends, which tracks what people are searching for, showed searches for “Ramsay Hunt syndrome” spiked over the weekend to their highest levels ever. Major media outlets, including the New York Times, Washington Post and BBC, all covered the story and included links to rare disease authorities, such as the National Organization for Rare Disorders (NORD). NORD’s website includes a glossary of thousands of rare diseases, including Ramsay Hunt syndrome.
“In cases of Ramsay Hunt syndrome, previously inactive (dormant) varicella-zoster virus is reactivated and spreads to affect the facial nerve,” NORD says.
Other symptoms include a rash and blisters in the ear and possible impacts on hearing. The condition is treatable with antiviral medications and steroids. In a follow-up message, Bieber told fans he’s getting better every day.
Two experts in facial paralysis told Rolling Stone magazine that with quick treatment Bieber is likely to recover but it could take several months. Ramsay Hunt syndrome has not been studied as much as Bell’s palsy, which is more common, one of the physicians said. According to one estimate, Ramsay Hunt syndrome affects five in 100,000 people in the United States every year.
Rare disease advocates said Bieber’s announcement has made an impact on rare disease awareness.
“In the first article I saw about Justin Bieber’s rare condition, the National Organization for Rare Disorders (NORD) was mentioned, which is the go-to organization for rare disease resources. If someone clicked the link to NORD’s website, for example, they are brought to a hub of information about all rare diseases. So hopefully after reading about Justin’s rare condition, some people explored the website,” said Taylor Kane, a rare disease advocate who manages a rare disease online community and founded the nonprofit Remember the Girls to represent female carriers of X-linked genetic disorders.
And though the bulk of the attention is falling on just one rare condition, Kane believes Bieber’s announcement will help the broader cause. There are an estimated 7,000 rare diseases and those affected have an “all for one” mentality, she said.
“Among our community there is a lack of competitiveness, so a win (like a new treatment) for one rare disease is a win for the entire community,” said Kane, who lost her father to the rare X-linked disorder adrenoleukodystrophy (ALD).
Jodi Taub, a New York City therapist and a rare disease patient herself, said Bieber’s announcement could make patients feel less alone and more willing to tell their own stories of living with rare conditions.
“It is very helpful when high-profile or famous individuals speak about living with a rare illness. It increases recognition, support, and advocacy and it lends an air of legitimacy and humanity to the illness,” said Taub, who has a primary immunodeficiency. “Many patients living with rare diseases rarely meet someone else who has their condition. Having a shared experience with a famous individual provides patients with the opportunity to reference the high-profile person when explaining their disease to others.”
Taub is among the speakers who will be featured at NORD’s upcoming Living Rare, Living Stronger Patient and Family Forum on June 26 in Cleveland. Learn more about the event.