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It's been more than a year sinceCeline Dion shared that she has stiff
person syndrome, telling fans in a Dec2022 Instagram post that her diagnosis
explained "all of the spasms that I’ve been having. Now, the singer
will be opening up about herhealth journey in a just-announced
documentary, I Am: Celine Dionwhich will stream on Amazon
Prime at a later date."This intimate exploration takes
viewers on a journey insideCeline's past and present
as she reveals her battle withstiff person syndrome (SPS) and
the lengths she has gone tocontinue performing for her
beloved and loyal fansreads a press statement for
the feature-length filmStiff person syndrome, aka
Moersch-Woltman syndrome, is a neurologicaldisorder that can cause symptoms
such as stiffening in the musclesof the trunk, along with stiffness
and rigidity in the legs and othermuscles, according to the Cleveland
Clinic. It can also lead to painfulspasms that either happen at random
or are triggered by things suchas noise, emotional distress
and even light physical touchaccording to the Cleveland Clinic.
The condition is incredibly rare, thoughDr. Amit Sachdev, medical
director for neurologyand director of the Muscle
Dystrophy Clinic at MichiganState University, tells Yahoo
Life that many neurologistswill never see a patient with
stiff person syndrome. He specializes in the disorder and says he
diagnoses a new patient aboutonce a year. "I have six patients
This is a very large practicefor this disease, he says.
Treatment usually involvestwo approaches, Sachdev says
stopping progression ofthe disease with IV immunoglobulin
treatments, and treating spasmscaused by spinal cord injury
that a patient develops over timeMany providers miss the
second step, but it is reallyimportant to remember that
spinal cord damage hasoccurred by the time the
disease has been picked upSachdev points out.
So what is life like for people whoactually live with this disease?
Several people with stiff person syndrome opened up to Yahoo Life about
their experiences. Here's what youneed to know.and-white photo
collage of people with stiff personsyndrome on a yellow-orange
ackground. Auerbach is takinga selfie; Trujillo is in a wheelchair
with a companion behind herGalgani is riding a horse, and Larcher
is standing as he posesfor the camera.
Michelle Auerbach, JenniferTrujillo, Janet Galgani and Andrew
Larcher all have stiff person syndromeand share what it's like to live with
the rare disorder. (Photos courtesyof: Michelle Auerbach, Jennifer
Trujillo, Janet Galgani and AndrewLarcher; illustration by Maayan Pearl)
I have to be careful when drivingbecause if someone honks their horn
and it startles me, I get spasmsin my back and ribcage that take
my breath awayJanet Galgani, 54, first developed
symptoms of stiff person syndrome 23 years ago, after her son's birth
She tells Yahoo Life that she had a spinalblock for her son's delivery and
or years, I thought that havingthat caused my issues in my back
Galgani says she had "severe painin her upper back that felt like spasms
When I tried to lay flat on myback on the floor and play with
I would often end up in tears due to the pain I had, she says. My doctor did
an X-ray and said, 'Nothingis wrong, so don’t lay on your
back if that hurtsHe told me it was probably
just a temporary thing andsent me on my way
But Galgani continued todevelop uncomfortable symptoms
including pain and stiffness in her legsand feet, and saw a series
of doctors who misdiagnosedher with depression and fibromyalgia
She suddenly developed diabetes at age 35a condition that's commonly
linked with stiff personsyndrome — but didn't have
an explanation for why it had happenedBy 2017, Galgani says she
was living in chronic painI could not wash dishes
fold laundry, sweep or mopthe floors without my back
spasming," she says. Butit wasn't until 2019 that she
was officially diagnosedwith stiff person syndrome
I was both terrified and relievedshe says of her diagnosis
noting that it made her "feel like I amot crazy and this isn’t all in
my head." Now, Galgani saysshe can't do a lot of the things
she used to enjoy, includinghorseback riding, roller
skating and cookingTriggers for me are things like
vacuuming, sweeping, mopping the floors, washing dishes,
blow-drying my hair, even wipingmyself after going to the bathroom
she says. "Getting dressedcan be difficult and having
to learn how to put on a bra ina way that doesn’t cause a
spasm is a challengeI have to be careful when
driving, because if someonehonks their horn and it
startles me, I get spasmsin my back and ribcage
that take my breath awayIt would feel like my tendons
were about to tear apartand there was nothing
I could do. Michelle Auerbach was diagnosedwith stiff person syndrome
four years ago, when she was 26. Her symptoms started
when she was a college studentnd had trouble physically getting
to class. I was having so much pain, and by the time
I got to school, I felt likeI had run a marathon
she tells Yahoo LifeI knew something was wrong
but I didn’t know whatAuerbach says she saw her family
doctor, who quizzed her onher history of depression
and then wrote her offafter her bloodwork came
back normal. She shruggedher shoulders and told me
that maybe I should try exercising moreshe recalls. After that, she
started experiencing horribletwisting, pulling, contorting
muscle spasms that could last hours on endShe says, It would feel like my tendons
were about to tear apartand there was nothing I could
but wait it out until the next one came alongAuerbach says walking became
Andrew Larcher, 26, firstdeveloped symptoms of
stiff person syndrome in2016. My journey, as many others
included lots of doctor visitshospital stays and very expensive
medical tests, he tells YahooLife, noting that it took five
years to get a diagnosis. I was upset andconfused, but I never lost hope,he says.
Larcher receives IV immunoglobulintreatments twice a month and
goes to physical therapybut says that stiff person syndrome
limits what I can do in a day a lotHe adds, I used to be able
to go and do pretty mucheverything, but now even
a 40-hour work week is verydifficult to accomplish
I was ignored by most doctorsI was told it was all psychosomatic
and that I needed therapyJennifer Trujillo, 38, tells
Yahoo Life that she struggledto have doctors take her
seriously when she developed symptoms of stiff person
syndrome when she waspregnant with her sixth child
I developed a tremorin my arm and a spasm in my back, she says
Trujillo says she used to be a singerbut that stiff person syndrome
now impacts her singingI have to mostly depend
on my kids to manage the houseshe says. I do the online shopping
but I rarely leave my roombeing startled could all
it sets me off. Cold, sounds,touch, stress, smells
cause a sudden attackI stopped running when my legs
ust froze, and I was stuckon the pavement during