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Celine DionThe 54-year-old canceled her upcoming European dates in 2023 courage world tour and shared in her tearful statement her Instagram page On Thursday, December 8th, she announced that she has a rare and terminal illness called Stiff Person Syndrome. Celine explained that “stiff person syndrome” caused her to have spasms that interfered with her “daily life,” from everything from walking to being able to use her vocal cords to sing. To learn more about Celine’s scary diagnosis, HollywoodLife spoke ONLY to a world-renowned neurologist dr Satonsh Kesari, MD, PhD, of the Providence Saint John Health Center in Santa Monica. The leading neurologist who did not treat Celine is also the regional medical director for the Research Clinical Institute of Providence Southern California.
HL: Do you think Celine will 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 at a time and find out what will help improve the disease and keep it at bay… I don’t want to say that we do 100% of the treatment can take away symptoms, but we can significantly improve them. But there are patients who do not respond as well or who are slow to heal even with treatment. So we need to understand this better and do more research to find a real cure.”
HL: Celine talked about it affecting her vocal cords, can you explain why that happened?
dr Kesari: “It’s a whole body disease, so each individual person can have different muscles affected to varying degrees, and obviously if it were affected, she would notice any subtle changes in her voice. So even a little inflammation in those muscles could cause her a significant problem.”
HL: How can it be treated and how long might it be before she could possibly sing again?
dr Kesari: “While we don’t fully understand the cause of stiff person syndrome, there are actually a variety of treatments that can be used that have been shown to be beneficial. We’ll start with general things like steroids that suppress the immune system. Another option that may help is plasmapheresis, [similar to a blood transfusion] where you switch and get rid of the bad immunoglobulins that attack the nerve muscle area by giving intravenous immunoglobulins. This can, so to speak, bring the immune system back into balance. There are also newer drugs that are used for other autoimmune diseases [like Lupus and Multiple Sclerosis] that can be used to treat this disease. On rare occasions, people have also had stem cell transplants, meaning they basically replaced your immune system, and in these cases, patients who had failed all else have had beneficial 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 than another.”
HL: What causes stiff person syndrome?
dr Kesari: “Stiff person syndrome is an autoimmune disease, which means that for some reason the immune system attacks the person’s own body and damages the neuromuscular junction, the connection from the nerve signal to the muscle that allows us to move our.” limbs. Because of this, patients may present with a variety of symptoms, such as stiffness or weakness, or muscle pain and spasms. There may be a genetic predisposition. And it is also associated with other autoimmune diseases. For example, a high percentage of patients with stiff person syndrome may have diabetes, type 1 diabetes.”
HL: Why is it called stiff person syndrome?
dr Kesari: “Patients become stiff and cannot move as fluently as they otherwise would. In severe untreated cases, especially when the actual back muscles are affected, you are very restricted in your movements. And like a statue, you can’t move, so to speak. It depends on which muscles it affects, but it can make talking and eating and everything difficult. That’s why there’s this analogy of a statue, because left untreated you move like a statue when all your muscles go stiff. In some of the old cases, they came in that way, and that’s why it’s called stiff person syndrome, because in the severe cases you’re totally stiff.”
HL: Can a healthy diet & exercise help?
dr Kesari: “As we get older, the immune system also ages. Regular exercise and a healthy diet maintain a good immune system so that things don’t go wrong. I’ve had patients with chronic autoimmune diseases and we’re all doing our standard treatments that are helping, but they still need treatment. And some of them have changed their diet in very significant ways and it has really reduced the incidence of all immune related issues including their neurological issues. They adopted a healthy, green, fresh and organic diet. No preservatives. Less carbohydrates. Lots of vegetables and fruit.”
HL: What symptoms would Celine likely have had before seeking medical help, and what happens if stiff person syndrome is left untreated?
dr Kesari: “The symptoms are stiffness, muscle pain, weakness and sometimes even muscle cramps. Very subtle symptoms can appear that can last months and even years before diagnosis. And sometimes it can be more of an acute onset, over weeks and months, with symptoms progressively worsening. In these cases, it is usually diagnosed much more quickly due to the severity and the rapidity of the symptoms. In some cases, they can be so severe that they limit your ability to work, walk, and take care of yourself. Because this stiffness can affect your whole body and be so bad that you can no longer walk or move. With the more severe forms of the syndrome, you may not be able to feed yourself.”
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