An Extraordinary Talent Fighting a Rare Disease
- Superstar singer Celine Dion, 56, who has been battling a rare, debilitating disease called stiff-person syndrome, made an incredible and surprising appearance on Sunday Night Football ahead of the Dallas Cowboys and Pittsburgh Steelers game.
- In a pre-recorded video for the official game presentation, the Canadian superstar tied the emotional connection of football to the human connection, using references from her 1996 hit, “It’s All Coming Back to Me Now.”
- Though playful at times in her delivery, the height of the emotion lies in what is unsaid. Dion, who has moved millions with her voice over past decades, has been fighting this neurological disease that has threatened this most beautiful gift to humanity, therefore Dion shows the true power of the fighting spirit amid her remarkable journey.
- According to the National Cancer Institute (NCI), stiff-person syndrome is a rare, progressive neurological disorder that causes muscles to stiffen, particularly in the torso, arms, and legs. The disease affects only one or two people every one million, per Johns Hopkins Medicine. If you’ve been diagnosed with a rare disease, know that there is hope. If you’re considering experimental treatment or searching for a specialist, clinicaltrials.gov can help.
In a pre-recorded video for the official game presentation, the Canadian superstar commented on the emotional connection of football to the human connection, using references from her 1996 hit, “It’s All Coming Back to Me Now,” with the powerful intro to the song playing in the background, a bit slowed down to further heighten the drama and suspense.
Read More— Celine Dion (@celinedion) October 7, 2024
“But really what beautiful passion it produced. What painful heartbreak it revealed … so so long ago,” she continued as a montage of football footage played. “Like so many old flames, it always feels right when they’re back together — don’t you think?”
“Like tonight, evoking the kind of magic they once produced. The Cowboys and the Steelers. A timeless classic on Sunday night.”
The seemingly odd (but in on the joke) and epic video ended with the “My Heart Will Go On” singer getting doused over the head with Gatorade, a years-old tradition in the sport, typically done to game-winning coaches.
Near, far, wherever you are…
You must see Celine Dion partake in one of football’s greatest traditions. @celinedion pic.twitter.com/POGbGEespb
— Sunday Night Football on NBC (@SNFonNBC) October 7, 2024
Yet, the height of the emotion lies in what is unsaid, that this graceful and immensely talented singer who has moved millions of people with her voice over past decades, has been fighting this neurological disease that has threatened this most beautiful gift to humanity.
To appear in this video, looking well and showing her sense of humor, not to mention seeing her face react to the orange Gatorade dowsing in ways it’s perhaps no longer supposed to in light of her illness, shows the true power of the fighting spirit amid her remarkable journey.
Understanding Stiff Person Syndrome and How Dion Is Coping
Celine Dion announced in December 2022 that she was diagnosed with stiff-person syndrome. The mega-star then had to cancel her tour dates multiple times, with her return to the stage a big unknown, leaving fans and the music community devastated.
According to the National Cancer Institute (NCI), stiff-person syndrome is a rare, progressive neurological disorder that causes muscles to stiffen, particularly in the torso, arms, and legs. The disease affects only one or two people every one million, per Johns Hopkins Medicine.
Research published in the International Journal of Environmental Research and Public Health shows that it affects women between 20 and 50 years old more often.
“A diagnosis like this for someone like Celine Dion, who was on stage day in and day out, who is a performer, is devastating,” board-certified neurologist and neuro-immunologist Dr. Sharon Stoll told CTV News.
Dion’s condition has led to spasms that have sometimes caused her difficulties walking and prevented Dion from using her vocal cords “the way [she’s] used to.”
In her Instagram video announcement, Dion said, “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 are supporting me and giving me hope,” she added at the time.
No matter what happens, Dion, more than two years after her diagnosis, said that she will always be a singer and will always remember the passion she felt singing.
“I sing in English, in French, I’ve sung in Mandarin, I’ve sung in Japanese, in Spanish and in Italian and people have come, they’ve always come,” she told Vogue France in her May 2024 cover story. “That, for me, was the proof that I was, and that I am, truly a singer. One thing’s for sure, I’ll love that feeling until the die I die.”
Keeping Up Good Emotional Health
Dion has remained positive throughout her health journey, which isn’t always easy. The mom of three is focused on her family and what brings her joy. Whether it’s supporting her favorite hockey team, the Edmonton Oilers, where she was spotted excitedly cheering the team, or at a concert with her friend, Dion is still making the most of her days when she’s feeling well.
Many people battling a health condition such as a chronic disease or cancer can benefit from a positive attitude.
Dr. Zuri Murrell of Cedars-Sinai says this helps a cancer patient’s prognosis.
“A positive attitude is really important,” Dr. Murrell told SurvivorNet.
“My patients who thrive, even with stage 4 cancer, from the time that they, about a month after they’re diagnosed, I kind of am pretty good at seeing who is going to be OK. Now, doesn’t that mean I’m good at saying that the cancer won’t grow,” Dr. Murrell says.
WATCH: Focusing on positivity and emotional health.
Other experts SurvivorNet has spoken to recommend that anyone facing cancer prioritize their overall well-being and do the things they love, including focusing on music like Dion.
Dr. Dana Chase, a gynecological oncologist at Arizona Center for Cancer Care, says people with cancer should make time for activities that make them happy.
“We know from good studies that emotional health is associated with survival, meaning better quality of life is associated with better outcomes,” Chase said.
Diagnosed with a Rare Disease? Here Are Some Resources
A multitude of feelings ranging from anxiety to fear to 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.
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, community centers may 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.”
Dancer Bethany Keime On Learning To Live With a Rare condition Called Hypertrophic Cardiomyopathy.
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.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more user-friendly 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.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
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.
Contributing: SurvivorNet Staff
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