What to know about stiff person syndrome and Celine Dion's diagnosis

ABC News' Dr. Jennifer Ashton explains the rare neurological disorder.
3:43 | 12/08/22

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Transcript for What to know about stiff person syndrome and Celine Dion's diagnosis
>>> NOW TO MORE ON CELINE DION'S HEARTBREAKING MESSAGE OVERNIGHT. THE SINGER REVEALING SHE'S BEEN DIAGNOSED WITH A RARE NEUROLOGICAL CONDITION CALLED STIFF PERSON SYNDROME. >> WE NOW KNOW THIS IS WHAT'S BEEN CAUSING ALL OF THE SPASMS THAT I HAVE BEEN HAVING. UNFORTUNATELY, THESE SPASMS AFFECT EVERY ASPECT OF MY DAILY LIFE. SOMETIMES CAUSING DIFFICULTIES WHEN I WALK, AND NOT ALLOWING ME TO USE MY VOCAL CHORDS TO STING WAY I'M USED TO. >> AND JOINING US NOW IS DR. JEN ASHTON, AND BOY, I WATCHED THE ENTIRE VIDEO THAT SHE POSTED ON HER INSTAGRAM. WHAT EXACTLY IS THIS SYNDROME? >> YOU KNOW, ROBIN, WHEN I WAS IN MEDICAL SCHOOL, WE WERE NOT TAUGHT ABOUT THIS. THIS IS INCREDIBLY RARE, BUT AS YOU'VE HEARD, IT'S A NEUROLOGIC CONDITION THAT'S OFTEN CHRONIC. IT'S OFTEN PROGRESSIVE, AND THE HALLMARK FEATURES ARE SPASMS OF MUSCLES. NOW WHEN YOU TALK ABOUT MUSCLES, WE'RE TALKING HEAD TO TOE, RIGHT? SO WE NEED OUR MUSCLES TO SWALLOW, TO SPEAK, TO SING, TO BREATHE, TO WALK, AND THAT SPASTICITY CAN BE INCREDIBLY PAINFUL. >> HOW HAS THIS TAKEN SO LONG TO BE TREATED? >> MOST DOCTORS BY DEFINITION HAVE NEVER SEEN THIS. OFTENTIMES IT'S CTHROUGH EXCLUS. WE GO THROUGH OTHER THINGS AND SAY IT'S NOT THAT. TO KNOW WHAT IT ISN'T, THAT'S VALUABLE INFORMATION. SOMETIMES IT'S A MUSCLE BIOPSY, AND WHEN YOU ARRIVE AT SOMEONE SAYING TO YOU, YOU HAVE A RARE CONDITION, THAT IS TERRIFYING. >> I KNOW, BUT PSYCHOLOGICALLY THE IMPLICATIONS THAT MUST HAVE WHEN YOU ARE TOLD THAT. >> YOU NEVER WANT TO BE A RARE -- A RARITY IN MEDICINE OR SCIENCE, BUT, IN FACT, IF YOU LOOK STATISTICALLY AT ALL OF THE AMERICANS WHO ARE TOLD THEY HAVE A RARE CONDITION, THIS CONDITION, STIFF PERSON SYN SYNDROME, INCIDENTS OF 1 IN A MILLION, YBUT IF YOU ADD UP ALL THE CONDITIONS, THAT'S ESTIMATED TO BE 25 MILLION AMERICANS WHO HAVE BEEN TOLD, YOU HAVE A RARE CONDITION. THAT'S SCARY. THAT'S FRUSTRATING. YOU CAN FEEL ALONE. IT'S HARD TO GET A GOOD MEDICAL TEAM AROUND YOU, BUT THE NIH ACTUALLY HAS A PROGRAM CALLED THE UNDIAGNOSED OR RARE DISEASES PROGRAM, AND YOU CAN SUBMIT AN APPLICATION TO BE EVALUATED AT THE NIH IN BETHESDA OR NATIONWIDE SITES AND TRY TO GET SOME ANSWERS. >> WHAT I HEAR FROM SOME FOLKS WHO SAY THAT, THEY SAY THAT THEIR SON OR DAUGHTER HAS A RARE CONDITION, A RARE DISEASE OR SOMETHING LIKE THAT, AND THEY JUST WANT TO KNOW THAT IT'S GETTING THE ATTENTION AS OTHER DISEASES. >> THAT'S RIGHT. THAT'S PART OF THE MENTAL COMPONENT. WE TALK ABOUT IT ALL THE TIME, CONNECTING THE DOTS FROM THE PSYCHOLOGICAL, THE EMOTIONAL, MENTAL TO THE PHYSICAL. THAT IS SO IMPORTANT TO ALWAYS HAVE HOPE, ALWAYS GIVE THE PATIENT HOPE. >> YEAH. >> GIVE THEM SUPPORT EVEN WHEN THERE'S NOT THE ANSWER THAT THEY MIGHT BE LOOKING FOR, AND RECOGNIZE WHEN YOU ARE TALKING ABOUT A CHRONIC CONDITION FOR WHICH THERE MAY BE NO CURE, THERE'S MANAGEMENT, AND SO IF YOUR SYMPTOMS ARE AT A TEN, EVEN GETTING THEM TO A SEVEN OR A FIVE ON THAT SYMPTOMS SCALE IS GOING TO BE A VICTORY, AND THAT'S WHAT WE NEED TO REMEMBER AND CELEBRATE. >> JEN, THANK YOU SO MUCH. THANK YOU FOR HELPING US UNDERSTAND. >> IT'S HARD

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