SIOUX FALLS, S.D. (KELO) — They’re diseases that only affect a small percentage of the population. That means most of us aren’t familiar with the names or the symptoms, but that doesn’t mean there isn’t a way to treat them. And that’s thanks in part to research happening right here in KELOLAND.

Justin Bieber is used to getting his picture taken. But recently he’s shied away from the cameras. The singer revealed that he has Ramsay Hunt Syndrome, causing one side of his face to droop.

A Sanford expert says Bieber’s rare condition comes from the chicken pox virus which can lie dormant in your body

“But often as it spreads down from the ear it can also cause some sort of numbness, like a type of palsy or numbness of the face and I think that’s what Justin Bieber is reporting,” said Sanford Health’s David Pearce.

Many people had never heard of Ramsay Hunt Syndrome before Bieber made his diagnosis public.

That’s not surprising to David Pearce. He knows all about rare diseases. He studies them on a genetic and molecular level and says about 7,000 rare diseases affect 30 million Americans. Two-thirds of those affected are children. Sanford Research is working to improve the treatment of rare diseases.

“At Sanford, we have the largest registry in the United States for rare diseases. The power of information and the power of numbers is how you study this if there are only 200 people in the United States with a disease chances are many physicians are not familiar with that disease or disorder,” said Pearce.

So Sanford makes that information available to doctors looking for answers, hopefully avoiding unnecessary pain, delays in treatment, and medical costs for the patient. Pearce says if the chicken pox virus that produced Bieber’s Ramsay Hunt can lie dormant then we might see something similar with COVID-19.

“Covid has taught us so much that we don’t know, viruses are very prevalent and we can be treated for them or we can clear them with our own immune system but what this chicken pox virus is showing us is it can be dormant what we don’t know is how dormant COVID-19 can be,” said Pearce.

Pearce says researchers are learning more about long haul syndrome, which by the way has its own registry.
He says he would not be surprised if we find dormant cases of COVID-19 in the years to come.