Celine Dion, 54, cancelled the upcoming 2023 European dates of her Courage world tour and in her tearful explanation, shared to her Instagram page on Thursday, December 8, she revealed she’s suffering form a rare and incurable disease called Stiff Person Syndrome. Celine explained that the ‘Stiff Person Syndrome’ has been causing her to have spasms, which have affected her “daily life,” from walking to being able to use her vocal cords to sing. To find out more about Celine’s scary diagnosis, HollywoodLife spoke EXCLUSIVELY to world renowned neurologist Dr. Satonsh Kesari, MD, PhD, of Providence Saint John’s Health Center in Santa Monica. The top neurologist, who has not treated Celine, is also the Regional Medical Director for the Research Clinical Institute of Providence Southern California.
HL: In your opinion will Celine be able to sing again?
Dr. Kesari: “I think so. There are many treatments that can help and I think she just needs to go through one by one and figure out what’s going to help improve the disease and keep it at bay…I don’t want to say we can take away 100% of the symptoms, but we can make them improve significantly. But, there are patients who don’t respond as well, or their healing is slow to progress, even on treatment. So, we do need to understand this better and we need to do more research to get a real cure.”
HL: Celine has talked about this affecting her vocal cords, can you explain why that would happen?
Dr. Kesari: “It’s a whole body disease, so different muscles can be affected to different extents in each individual person, and obviously she would notice any subtle changes in her voice if it was affected. So, even a little bit of inflammation in those muscles could cause a significant problem for her.”
HL: How can it be treated and how long could it take before she could potentially sing again?
Dr. Kesari: “Even though we don’t fully understand the cause of Stiff Person Syndrome, there are actually a variety of treatments that can be used and that have shown to be beneficial. We start with sort of broad things such as steroids, that suppress the immune system. Another option that can help is plasmapheresis, [similar to a blood transfusion] where you change out and get rid of the bad immunoglobulins that are attacking the nerve muscle area by giving intravenous immunoglobulins. That can rebalance the immune system, so to speak. There are also newer drugs that are used for other autoimmune disorders [like Lupus and Multiple Sclerosis] that can be used in this disorder. In rare cases, people have also done stem cell transplants, which means you know, replacing your immune system basically, and in those cases, patients who failed everything else had positive effects. There are a variety of things that help quickly and some that help slowly over time, it really depends. And sometimes one approach works better for one person, over another approach.”
HL: What causes Stiff Person Syndrome?
Dr. Kesari: “Stiff Person Syndrome is an auto-immune disorder, meaning that the immune system for some reason is attacking the person’s own body and damaging the neuromuscular junction, the connection from the nerve signal to the muscle, which allows us to move our limbs. That is why patients can present with a variety of symptoms such as stiffness or weakness or aching of the muscles and spasms. There may be a genetic predisposition. And it also goes along with other autoimmune disorders. A high percentage of patients with Stiff Person Syndrome can have diabetes for instance, type one diabetes.”
HL: Why is it called Stiff Person Syndrome?
Dr. Kesari: “Patients become stiff and not able to move as fluidly as they otherwise would. In severe untreated cases, especially if the actual back muscles are involved, then, you know, you’re very limited in your movements. And like a statue you can’t move, so to speak. It depends on what muscles it effects, but it can make it difficult to talk and eat and everything. That’s why there is that analogy of a statue, because untreated, if all your muscles become stiff, you move like a statue. In some of the old cases that’s how they came in and that’s why it’s called Stiff Person Syndrome, because you’re totally stiff, in the severe cases.”
HL: Can a healthy diet & exercise help?
Dr. Kesari: “As we age, the immune system ages. Regular exercise and healthy eating will maintain a good immune system, so it doesn’t go awry. I’ve had patients who had chronic autoimmune disorders and we do all of our standard treatments which help, but they still need treatment. And some of them have changed their diet in a very significant way and it really did reduce the incidence of all immune related problems, including their neurological problems. They adopted a healthy, green, fresh, organic type of diet. No preservatives. Less carbs. Lots of vegetable and fruits.”
HL: What symptoms would Celine have likely faced before seeing medical help, and what happens if Stiff Person Syndrome goes untreated?
Dr. Kesari: “The symptoms are feeling stiff, muscle aches, feelings of weakness and even muscle spasms at times. There can be very subtle symptoms that can go on for months and even years before diagnosis. And, other times it can be more of an acute onset, over weeks and months with symptoms getting progressively worse. In those cases it’s usually diagnosed much faster because of the severity and the rapidity of the symptoms. In some cases, they can be so bad as to limit your ability to work, to walk, to take care of yourself. Because this stiffness can affect your whole body and it can be so bad that you can’t walk and move. In the more severe versions of the syndrome it may be that you can’t feed yourself.”