Singer Celine Dion, 55, remains strong and is working toward recovery while battling a rare neurological disorder called stiff-person syndrome (SPS) despite being in occasional pain according to her family who provided a health update.
Symptoms associated with SPS include the stiffening of your muscles particularly in your torso, arms, and legs. Stiff-person syndrome (SPS) does not have a cure and can worsen over time. However, people diagnosed can manage symptoms with treatment which include muscle relaxing drugs.
A diagnosis of cancer or disease can impact family members too. Feelings of “helplessness, guilt, anger and embarrassment,” according to researchers.
Loved ones of people battling a disease or cancer can show their support by getting involved and showing that you care, which can relieve added stress and anxiety. Helping with everyday tasks such as household chores or preparing a meal are great ways to show support.
For the family of Singer Celine Dion, 55, the last few months have been difficult as they watch the “My Heart Will Go On” singer live with stiff person syndrome, a rare neurological disorder. Despite her challenges, the resilient singer remains strong amid adversity.
For loved ones supporting a family member battling a disease, you may be wondering how to best offer added support. SurvivorNet has practical advice to help you support your loved ones.
Celine Dion’s older sister Claudette revealed details on how the “All by Myself” singer is doing.
“She’s doing everything to recover,” Claudette told Hello Magazine.
“She’s a strong woman,” Dion’s sister added.
Celine Dion revealed her diagnosis in December 2022. She postponed and/or canceled several concerts she had scheduled because of her diagnosis.
According to the National Cancer Institute (NCI), stiff-person syndrome is a rare, progressive neurological disorder that causes your muscles to stiffen particularly in your torso, arms, and legs. The disease affects “only one or two people per million,” according to Johns Hopkins Medicine.
The condition produces episodes of muscles “locking up and becoming stiff as a board,” Johns Hopkins Medicine described.
“More commonly, it affects women, usually starting in the 40s or 50s. More than 50% of patients have a coexisting non-neurological autoimmune disease, such as Type 1 diabetes or autoimmune thyroid disease,” Dr. Andrew McKeonsaid to Mayo Clinic.
Celine Dion sings at a concert in 2008 (Photo Credit: Jun Sato/ WireImage)
“It’s an illness we know so little about,” Claudette said of her sister’s condition.
“There are spasms – they’re impossible to control. You know who people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles,” Claudette continued.
The National Cancer Institute says muscle-relaxing drugs can help manage SPS 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,” NCI said.
How to Support a Loved One Facing a Health Challenge
If you have a loved one fighting a disease or cancer, SurvivorNet has some ideas to help you better support your loved one. Simple tasks like helping with household chores or running errands can do wonders for your loved one that’s diagnosed. These tasks can make all the difference in relieving stress when the effect of chemotherapy brings on fatigue for example. Other ideas to help your loved one battling cancer include cooking or bringing prepared meals or doing an activity you both enjoy together.
The support helps put your loved one battling a disease or cancer more at ease which may be filled with anxiety after a diagnosis or in the midst of intense treatment.
“There are a number of common things cancer patients can experience,” Dr. Shelly Tworoger, a researcher at Moffitt Cancer Center told SurvivorNet.
“Anxiety, depression, financial toxicity, social isolation, and PTSD,” Dr. Tworoger said are all emotions cancer warriors may experience and can be eased by loved ones.
If you are a caregiver of your loved one facing a diagnosis, it is important to maintain your own mental and physical health as well.
“Caregiving is the most important job in the universe because you are there through the highs and lows,” Julie Bulger manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center told SurvivorNet.
Caregivers must also watch out for “caregiver burnout” where stress, anger, fatigue, and illness emerge from putting another person’s needs ahead of their own.
Caregivers who find themselves struggling to care for a cancer warrior should seek out a therapist, or a support group of their own either online or in person.
Impact a Diagnosis Can Have on the Family
Research published in The Journal of the Royal Society of Medicine studied the impact of disease on family members. It found, “Most chronic diseases have similar effects on family members including psychological and emotional functioning, disruption of leisure activities, effect on interpersonal relationships, and financial resources.”
Feelings of “helplessness, lack of control, guilt, anger, and embarrassment” are some common emotions parents, siblings, and other relatives within the household of someone battling a health condition may experience according to researchers.
Other ways a disease, for example, may impact the lives of family members include:
Affecting sleep
Concerns about medical treatment
Altered food choices
Using religion, spiritual, and cultural beliefs to cope
Feeling obligated to provide a case
Concerns about understanding the disease or illness
Needing support from others
Limited freedom
Worrying about the death of a loved one
Another study published in Health Expectations, an international journal of public participation in health care and health policy, says parents bear the brunt when a child is battling a health condition.
“Parents have substantial responsibilities including advocating for their child,” researchers in the study said.
“[Parents] responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep-deprived and there are wider impacts on siblings,” researchers added.
When families come together to collectively face a health challenge, it not only strengthens family bonds, it also helps everyone involved cope.
