There’s a disease that really is one in a million, and though it may be rare, stiff person’s syndrome can be debilitating to those affected – including internationally-beloved singer Celine Dion. The global superstar has been diagnosed with the condition after a spate of alarming symptoms. Here’s what you need to know about the disorder – plus 3 common signs to look out for.
Stiff person’s syndrome is a rare neurological, autoimmune disorder – and it’s Celine Dion’s recent revelation around her illness that has left many wondering what the condition actually entails. It usually afflicts people between 30 and 60 years of age, affects around twice as many women as men, and is characterised by uncontrolled muscle spasms and stiffness.
"While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,”the 54-year-old singer said on Instagram.“Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
As is the case for Celine Dion, many of those with stiff person’s syndrome suffer from spasms – it’s one of a number of common signs of the progressive disease. It interferes with the brain’s communication pathways to the muscles, resulting in the central nervous system rapidly firing through the spinal cord, nerves and muscles, which is the cause for the trademark spasms and rigidity. Researchers have found those with the condition have high levels of antibodies that target one of the proteins in the body which is essential for healthy muscle function – meaning it involves autoimmunity, where the body is attacking itself.
With the normal neural pathways disrupted, the muscles are unable to stop contracting, hence the spasms. But here's where it gets confusing – not everyone with the condition has these antibodies, and as such, there's an ongoing uncertainty around the true cause of stiff person’s syndrome. While we may not have the source of the disease, we do know the signs – let’s unpack 3 of the most common symptoms.
This is one of the more well-known symptoms associated with stiff person’s syndrome, and these spasms can be painful and debilitating, in some cases they may even cause patients to fall down, with the intensity of the spasms also known to break bones. Triggers may include certain noises, stress, touch or other sensations. Over time, repeated muscle spasms can result in difficulty walking.
Stiffness – particularly in the limbs – is a common sign of stiff person’s syndrome, hence the name. People with the condition may also experience muscle stiffness across their bodies, which can even affect the facial muscles required for eating and speaking, leading to significant disruption to daily life. In the late stages of the disease, some people may experience dangerous issues with the breathing muscles – from the diaphragm to the rib cage and abdominal muscles – which can be deadly. Back muscles are commonly affected as well, with many sufferers left hunching over as a result – this can then have knock on effects on the spine and posture.
Many people with stiff person’s syndrome experience sensory issues and an increased sensitivity to noise and light, with many experiencing anxiety and stress around these symptoms. It can affect a person’s ability to work or even go outside, lest they be confronted with sensory overload. Many people with the condition are misdiagnosed with multiple sclerosis, fibromyalgia, Parkinson’s disease or anxiety as a result of overlapping symptoms, leaving people with inadequate treatment and support.
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