Laughter Through Challenges
- Celine Dion, 57, is embracing resilience and humor amid her battle with stiff-person syndrome, joining the viral “What’s in My Bag” trend with a lighthearted Instagram video. The singer shared quirky purse essentials and later posted a touching tribute to her late husband René Angélil on the 10th anniversary of his passing.
- Dion, who is living with a neurological disorder called stiff-person syndrome (SPS), revealed in December 2022 that she was diagnosed with the rare disease.
- To manage her rare condition, she is undergoing intravenous immunoglobulin (IVIG) treatment, which the American College of Rheumatology (ACR) defines as therapy made from antibodies collected from the plasma of thousands of healthy donors. She also receives support from a physical therapist, a vocal therapist, and takes prescribed medications.
- Handling a rare disease can be very overwhelming, but SurvivorNet’s experts have guidance on how to seek out specialized treatment providers. More common diseases might not require the same degree of specialized attention, but finding doctors with specific expertise may be necessary for rare ones. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
- The SurvivorNet Clinical Trial Finder and websites called Clinical and PubMed are great resources to use if you’re considering experimental treatment for your rare disease.
- Stand-up comedian Jesus Trejo agrees laughter can heal pain, saying, “The effects of it just reverberate through your body, and can change an already bad situation into a better one.”
The 57-year-old mom, who shares three sons with her late husband, René Angélil, who passed away 10 years ago, took to Instagram this week to share a comical video revealing what items are kept in her purse.
Read MoreShe then proceeded to show that she had dog food, medicine, mentos, hand sanitizer, and her favorite lipstick.View this post on Instagram
Dion comically added that she also carries a microphone “just in case something happens.”
She explained, “People ask me to sing happy birthday .. I’m ready. You know, it takes a lot of balls to get out the microphone and pretend that you are on.”
Noting how she also carries her VIP badge because people often question if she really is Celine Dion. Jokingly, she took out an old landline phone, saying that anyone who doesn’t believe her, she’ll call 911 and have them arrested.
Dion later shared a heartfelt post in memory of her late husband, who died on January 14, 2016, with a large paining of her beloved above her piano, writing, “Mon amour, ten years without you feels like just a day, and yet each day feels like a decade.”
Expert Resources On Coping With Loss
She continued, “Ten years without your caress, and yet every day I feel your touch…We miss you more than we can bear, but you taught us to be strong.
“We love you more, every day and every year. – Céline, RC, Nelson and Eddy xx…”
View this post on Instagram
Dion’s continued ability to share lightheartedness amid battling a disease comes after she admitted in a speech before a screening of her documentary “I am: Celine Dion,” that her neurologist Dr. Amanda Piquet was helping her managing SPS.
According to CNN, Dion told her audience at the screening event, “In finding ways to manage and treat my condition, Dr. Piquet has delivered a very, very important result for me.
“She has replaced my fear with hope.”
“This movie is a love letter to each of you, and I hope to see you all again very soon,” Dion added, addressing her fans.
Celine Dion’s Battle With Stiff-Person Syndrome
Celine Dion revealed that she was diagnosed with stiff-person syndrome back in December 2022. The heartbreaking diagnosis led her to postpone and/or cancel several concerts scheduled for Spring and Summer 2023.
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.
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“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.
New Hope For Stiff-Person Syndrome Treatment
Celine Dion spoke about how she’s managing her symptoms in an earlier interview with the “TODAY” show, revealing she’s using intravenous immunoglobulin [IVIG], which the American College of Rheumatology (ACR) describes as therapy “prepared from a pool of immunoglobulins (antibodies) from the plasma of thousands of healthy donors.”
The ACR explains, “Immunoglobulins are made by the immune system of healthy people for the purpose of fighting infections. Unlike many of the medications prescribed by rheumatologists, IVIG/SCIG [Subcutaenous Immunoglobulin] do not increase the risk for infection.
“IVIG/SCIG work in different ways to prevent the body from attacking itself and to decrease several types of inflammation in the body. It is considered safe for use during pregnancy and breastfeeding.”
It’s a type of treatment that’s used for various types of autoimmune and immunodeficiency conditions.
As Dion is reportedly seeking help from physical therapists, medication, and a vocal therapist, it’s a relief to see she’s been able to manage the disease—as her journey with SPS is offering hope for other patients battling rare disease.
View this post on Instagram
Just last year, the FDA cleared Kyverna Therapeutics’s CAR T-cell therapy trial for a Stiff-Person Syndrome Trial, according to CGTLive.
Dr. Marinos Dalakas, MD, FAAN, Professor of Neurology, Director, Neuromuscular Division, Thomas Jefferson University School of Medicine, Philadelphia, PA, said in a statement, “CAR T-cell therapy has already shown preliminary but promising results in patients with SPS treated outside of the US.
“I find the KYSA-8 trial of extraordinary importance as a promising novel therapy for patients with stiff person syndrome who do not respond to current therapies, with implications in providing potentially long-lasting benefits.”
In regard to other treatment methods, the National Institute of Neurological Disorders and Stroke (NINDS) explains, “With appropriate treatment, SPS symptoms may be kept under control.
“Several symptoms improve with oral diazepam (an anti-anxiety and muscle relaxant drug) or with drugs that alleviate muscle spasms, such as baclofen or gabapentin.”
Meanwhile, a study founded by the NINDS showed that intravenous immunoglobulin (IVIg) treatment, the type Celine Dion is undergoing, “is effective in reducing stiffness, sensitivity to noise, touch, and stress and for improving gait and balance for people with SPS.”
Humor & Positivity Through Challenges
It’s interesting to note, that according to the National Library of Medicine, research has shown that the amount of pain medication needed for patients is reduced after they watch funny movies.
And perhaps humor, like Celine Dion makes sure to have in her life, could also help when someone is dealing with the pain that comes amid a health challenge, whether it’s psoriasis or even cancer.
The importance of positivity amid tough times has been seen through stand-up comedian Jesus Trejo in Long Beach, California.
Trejo became a caregiver for both of his parents after his mother was diagnosed with a cancerous brain tumor and his father was later faced with colon cancer. But instead of panicking and focusing on the devastating nature of the situation, the only child stepped up to care for his parents with love and laughter.
In a previous interview with SurvivorNet, Trejo opened up about how he put his career aside to care for his parents in their time of need while making time to smile along the way.
Stand-Up Comedian & Cancer Caregiver, Jesus Trejo Reminds Us That ‘Laughter is a Game-Changer’
“The only advice I have for anyone watching this is laugh, and laugh often, laugh at yourself. Don’t take yourself seriously. Things are already bad. Because once you do that, it’s a game-changer,””Trejo told SurvivorNet.
He also says the laughter itself might be brief, but “the effects of it just reverberate through your body, and can change an already bad situation into a better one.”
Focusing on hope, and maintaining a positive attitude amid a health battle can always be helpful.
Anecdotal evidence from SurvivorNet experts points to how a positive mindset can impact a cancer prognosis.
Dr. Zuri Murrell of Cedars-Sinai told SurvivorNet in an earlier interview, “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.”
“But I’m pretty good at telling what kind of patient 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.”
Meanwhile, Dr. Dana Chase, a Gynecologic Oncologist at UCLA Health, also says it’s important to try to focus on the good, stay positive, and do things that bring you joy to the degree you’re able to do so amid battling a disease like cancer.
“We know, actually from good studies, that emotional health, quality of life is associated with survival, meaning better quality of life is associated with better survival, better outcomes,” Dr. Chase said in an earlier interview.
Contributing: SurvivorNet Staff
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