Why rare conditions like Céline Dion’s are so hard to diagnose

[Music] I can read your mind now Seline Deon is telling her own story in an exclusive interview with CBC News Chief correspondent Adrien Areno Dion's uphill climb after a devastating diagnosis of stiff person syndrome a rare and Progressive neurological condition and I just don't want to collapse and be in a chair for the rest of my life we don't understand the underlying path of physi ology Dion's doctor told us what researchers do know is there is no cure instead Medical Teams use immune therapies to combat the disease while other treatments like Physiotherapy and muscle relaxant help manage its grueling symptoms but I have to admit it's been a struggle it's painful um when your muscles are not coordinated properly you're not going to be able to walk stiff person syndrome is one of a long list of debilitating Progressive neurological conditions like epilepsy multiple sclerosis huntingtons Parkinson's and ALS this retired neurologist says complex conditions can be tricky to pinpoint and sometimes get misdiagnosed some patients may take years or even a decade before the correct diagnosis is made it took Dion nearly two decades to get answers an experience this Toronto resident can relate to my hand would just contort into this really kind of crazy position Pamster Cel has visited more than eight Specialists over seven years the cause of her strange symptoms turned out to be multifocal motor neuropathy a rare disease that causes muscle weakness she's now grateful that Dion is putting a spotlight on neurological conditions like hers because it makes the rest of the communities feel a little less alone patients and doctors say their hope is that more attention on rare disorders from a Canadian Superstar could mean more research all to find better treatments so sufferers can still talk walk and sing Lauren Pell CBC News Toronto [Applause]

Channel: CBC News: The National

Views: 1,367

Keywords: celine dion, stiff person syndrome, what is stiff person syndrome, celine dion disease, celine dion interview, celine dion condition, neurological disorders, rare neurological disorders, stiff person syndrome symptoms, stiff person syndrome treatment, neurological disorder treatment, progressive neurological conditions, Lauren Pelley, CBC, CBC News, The National

Id: KCm2nMwDKec

Length: 2min 21sec (141 seconds)

Published: Thu Jun 13 2024