Learning to Live With a Rare Disorder
- Celine Dion tragically revealed in late 2022 that she was diagnosed with a rare neurological disorder known as stiff-person syndrome.
- Her sister, Claudette, recently shared an update on the singer’s condition, saying she is “determined” and “working hard” to learn to live with the disease.
- Dion and her family have not said much publicly about what sort of treatment she is undergoing. There is no cure for the disease, but there are interventions that can make symptoms easier to manage.
- In the U.S., it’s estimated that there are currently 25 to 30 million people living with rare diseases. For these individuals in particular, it’s so important to advocate for your own health.
Claudette reportedly appeared on Canadian TV show, “Bonsior Bonsior” to give fans an update on her sister’s condition.
Read MoreDion’s Rare Disease Journey
Dion announced that she was diagnosed with stiff-person syndrome in December 2022.This disorder has led to spasms that have sometimes caused her to have difficulty walking and prevented her from using her vocal cords the way she was used to. In a video posted to Instagram at the time, Dion said that she would have to reschedule or cancel her planned shows due to her condition.
“It hurts me to tell you today that this means I won't be ready to restart my tour in Europe in February. 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,” she said.
“I always give 100% when I do my show but my condition is not allowing me to give you that right now. For me to reach you again, I have no choice but to concentrate on my health at this moment. And I have hope that I'm on the road to recovery. This is my focus and I'm doing everything I can to recuperate.”
Dion and her family have not said much publicly about what sort of treatment she is undergoing. There is no cure for the disease, but there are interventions that can make symptoms easier to manage.
What is Stiff-Person Syndrome?
Stiff-person syndrome is a rare, progressive neurological disorder.
According to Johns Hopkins Medicine, symptoms associated with the disease include:
- Painful muscle contractions
- Muscle spasms (which often begin in the legs or back)
- Difficulty walking
- Unsteadiness and falling
- Shortness of breath
The National Cancer Institute (NCI) says muscle-relaxing drugs can help manage some of these symptoms.
"Intravenous immunoglobulin treatment is effective in reducing stiffness, sensitivity to noise, touch, and stress and for improving gait and balance for people with SPS," according to the NCI.
Learning to Live With a Rare Disease
Like Dion, millions of people in the U.S. are living with rare diseases. A rare disease is defined as a condition that affects fewer than 200,000 Americans, according to the National Organization for Rare Disorders (NORD). Many other countries have similar definitions.
The National Institutes of Health puts the number of Americans living with a rare disease between 25 and 30 million. Though people living with rare illnesses are certainly not alone, it can be an extremely frustrating experience.
Many people living with rare disorders have difficulty getting the correct diagnosis, finding experts who can treat them, or explaining their condition to others.
Despite the frustration, 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.”
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