Strength & Resilience In The Face of Chronic Disease
- Singer Celine Dion, 56, may be battling a rare neurological disorder called stiff-person syndrome (SPS), but she’s not letting it stop her from living life to the fullest and recently modeled on the cover of an upcoming Vogue France issue.
- Dion revealed in December 2022 that she was diagnosed with stiff-person syndrome, and the diagnosis prompted her to postpone and/or cancel several concerts scheduled for last year due to her heartbreaking diagnosis. It’s great to see Dion modeling on a magazine cover and continuing to inspire fans, despite her health struggles.
- Overcoming adversity can seem daunting — but having a plan can make it feel achievable. It’s important to remember when setting goals that breaking them into smaller steps is key.
The 56-year-old mom of three, also known as the “Queen of Power Ballads,” dressed to impress in the two cover photos for the magazine. In one of the images, Dion is seen revealing a lot of skin while donning white shorts and an opened, white button-down top by Balenciaga. In the other cover photo, Dion is seen wearing a baby-pink colored Alaïa coat.
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She continued, “Beauty is what surrounds us, it is there. There are people that see it, and there are people that observe it. Today, I am a woman, who feels strong and positive about the future. One day at a time.”
And as for how she’s become so resilient, Dion credits her celebrity status.
Dion explained, “[Fame] has made me want to never give up on anything. I was born to communicate on stage, with my team, and with my voice, and with my fans. It’s about sharing. I was born to do that.
“When I found myself on stage for the first time, in Québec, I caught the bug! What has fame taken away from me? Nothing? Because I live every day, and I move forward.”
The May 2024 Vogue France issue will be out on newsstands and on the web on April 24.
The magazine also praised Dion’s appearance on the cover of their May issue as “a gift,” stating on Instagram, “Everything about her is so genuine, so real. Her sincerity, her humor, her love, and the surprising paradox of her being an international star with such disarming, down-to-earth charm.
“Celine is making her comeback tentatively, one day at a time, but with admirable determination. She is a vocalist behaving like an athlete! We will be waiting to hear her voice and its perfection, that we have missed. We will be overjoyed to hear it again.”
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As for how Dion is coping with Stiff Person Syndrome, she told Vogue France, “I’m well, but it’s a lot of work. I’m taking it one day at a time.”
She explained further, “I haven’t beat the disease, as it’s still within me and always will be. I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that’s me, now with Stiff Person Syndrome
“Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice… I have to learn to live with it now and stop questioning myself. At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?”
Dion then stated some truly inspiration words, saying, “Life doesn’t give you any answers. You just have to live it! I have this illness for some unknown reason.
“The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself. I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!”
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And although Dion is unsure whether she will tour again, as her struggle with SPS varies day to day, she insists she is lucky for the support she has to live with the disease.
“People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means, and this is a gift,” Dion insists.
“What’s more, I have this strength within me. I know that nothing is going to stop me.
Although her health progress is uncertain, she says “the will” she has will never go away, adding,”It’s the passion. It’s the dream. It’s the determination.”
Celine Dion’s Battle With Stiff-Person Syndrome
In December 2002, Celine Dion revealed that she was diagnosed with stiff-person syndrome, and the diagnosis led her to postpone and/or cancel several concerts scheduled for Spring and Summer 2023 due to her heartbreaking diagnosis.
In her Instagram video announcement, Dion informed her fans, “I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face these challenges and talk about everything that I’ve been going through.
“I have a great team of doctors working alongside me to help me get better and my precious children, who are supporting me and giving me hope.”
Stiff-person syndrome (SPS) is described as a rare neurological disorder with features of an autoimmune disease, that is “characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms,” the National Institutes of Health explains.
The NIH notes that people with this disease, which has been found to affect twice as many women as men, are often seen with unusual postures, with their backs hunched over and stiffened.
“A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain,” the medical research agency adds.
According to Johns Hopkins Medicine, symptoms associated with the rare, progressive neurological disorder include:
- Painful muscle contractions
- Muscle spasms (which often begin in the legs or back)
- Difficulty walking
- Unsteadiness and falling
- Shortness of breath
Although the disorder isn’t curable, people with this disease can be treated with “IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers” to help control symptoms. Symptoms can sometimes include falling due to a lack of their body’s normal defensive reflexes.
“People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine. A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS,” NIH explains.
Learning to Live With a Rare Disease
Many people living with rare disorders have difficulty getting the correct diagnosis, finding experts who can treat them, or explaining their condition to others. However, in Celine Dion’s case, it’s admirable how she’s thriving and showing others that life can be lived even while battling health struggles.
Despite the frustration many may have, it’s important to advocate for your own health which is some cases, could mean being pushy when seeking a diagnosis, treatment options, and more.
“The truth is you have to be in tune with your body, and you realize that you are not the statistic,” Dr. Zuri Murrell, a colorectal cancer surgeon at Cedars-Sinai, told SurvivorNet in a previous chat.
“…It’s important for you to actually educate yourself and be your own health care advocate,” he added, noting he recommends every patient seeking answers about a health condition go to their doctors appointments with a plan.
Dr. Zuri Murrell explains why it’s important to advocate for yourself in healthcare settings.
“My plan would be [saying], ‘hey, doc, I would prefer to see whether or not this treatment you have works. But let me come back in a month,'” Dr. Murrell added. “If it’s not working in a month, what would the next step be? And the doctor should be able to tell you, if it’s not working in a month, then I would do this … As a healthcare professional, that’s what I do for all my patients.”
Have a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions — cancer or otherwise — more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment (or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.”
And if you’d prefer to search for clinical trials on a more user-focused site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
Newly-Developed Drugs
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Overcoming Adversity
If you’ve been through a difficult health challenge or any type of adversity throughout your live, Psychologist Dr. Samantha Boardman suggests learning to play up your strengths.
“I sometimes will ask patients, tell me about yourself when you were at your best,” she explained. “Using that story, trying to figure out what strengths come to mind. Is it patience? Is it appreciation of beauty? It is perseverance? [Then we can] use those strengths in constructive ways to navigate their cancer journey.”
Facing Cancer: How to Turn Stress into Strength
Dr. Boardman says another way to approach harnessing the strength you already have is by tapping into your values. This could be family, close friendships, spirituality, or commitment to a healthy lifestyle.
Reminding yourself of what your values are and how you are living accordingly is another way to unleash that inner strength.
Lastly, patients shouldn’t underestimate the value of simply opening up, Dr. Boardman says. This could mean speaking to a close family member or friend, or it could mean seeking support in other ways by finding a therapist that meets your needs or looking into joining a support group.
Having negative feelings throughout your cancer journey is to be expected, however, doctors will tell you that people who find a way to work through the emotions and stay positive tend to have better outcomes.
“A positive attitude is really important,” says Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center in Los Angeles. “I’m pretty good at telling what kind of patients are going to still have this attitude and probably going to live the longest, even with bad, bad disease. And those are patients who, they have gratitude in life.”
Contributing: SurvivorNet Staff
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