In December 2022 Celine Dion announced she has stiff person syndrome (SPS), “a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time”.¹

On 25 June 2024, the documentary I am: Celine Dion was released. Soon afterwards an international panel of patients from the SPS patient advocacy campaign “Bent Not Broken Autoimmune” took part in a powerful discussion about the documentary and their own lives with SPS.²

Lea’s perspective

Lea Jabre Fayad, 37, from Beirut, Lebanon is the founder of Bent Not Broken Autoimmune, a social media channel that seeks to raise awareness of SPS.³ There, she chronicles on video her debilitating battle with SPS.

When Lea first heard Celine’s announcement that she had been diagnosed with SPS—after experiencing symptoms that started in 2008—she felt “profound sadness”.

“We [the SPS community] know the suffering, the severe rigidity, the falls, the fractures, the spasms,” she says. “At my lowest point, SPS robbed my ability to walk, to work, to function ‘normally’ and even to speak.”

Lea is hopeful that Celine can help bring change for people living with SPS around the world, through highlighting the enormous challenges that the SPS community face. Talking about the condition—and the pain it causes—as Celine has done, is vital, she says.

“It’s not the disease that will kill me, it’s the pain… If you talk about it, it means you’re not there yet.”

Angela’s perspective

Angela Davis, from North Carolina in the United States, is 48 years old and was diagnosed at 39 with stiff person syndrome. She advocated for the 2016 Cures Act and is a prolific writer.

She says that Celine’s diagnosis shocked her: “I never thought we would share [SPS] and the warrior spirit you must embody to fight such an insidious rare disease.” She highlighted the wider fight, too—”the fight for some medical relief and attention”.

She welcomes how the documentary has generated “a lot of public interest awareness”. Since its release she has been “inundated with messages from people all over the world” wanting to know more about SPS. 

Joy’s perspective

Joy Lwangu is 40 years old and was diagnosed at 35. She owns a small business and lives in Kenya, Africa.

She describes SPS as “a disease invisible to the world around you for years” until there is finally a diagnosis. “[It] finally gets diagnosed when your degeneration is too drastic to be ignored,” she says.

The scene in the documentary in which Celine has a seizure is highly distressing—Celine’s body freezes and she whimpers in pain. The advocates on the panel are all too familiar with these excruciating episodes. Joy says she needed twelve surgeries to her shoulder after her last seizures.

Alison’s perspective

Alison Lafferty-States is from Nevada in the United States. She is 26 years old and was diagnosed at 23. She is a former teacher and adventurist, current military wife, and mother of a one-year-old daughter.

Of her own diagnosis, she says: “I’m angry. SPS uprooted my whole life. I was a teacher, an avid hiker, now I’ve had to give all that up. But it’s a double-edged sword. I can help others with this disease.”

She remarks on Celine’s discussion of her long wait for a diagnosis: 

“Seventeen years just shows how long it takes for some people to get diagnosed, even the person who has the most resources available to her.”

While the documentary was hard viewing “because it brought up some really bad memories”, Alison was impressed that Celine was “willing to put herself out there” and show her vulnerability. She sees the documentary as a “stepping stone” for others who may be living with undiagnosed SPS and looking for answers.

Ilea’s perspective

Ilea Khan, 41, was diagnosed at 31 and is from Connecticut in the United States. She was previously a chief medical resident at Harvard, Yale Medical School faculty, and is now a psychiatrist in private practice. She works mostly from her bed, where she usually spends about 20 hours a day, owing to her condition. 

Ilea collaborates with Lea on a YouTube channel, Stiff Person Syndrome SPS – Heart to Heart, on which she and Lea share their experiences on unspoken topics about life with SPS.⁴

Ilea believes that “the devastation of SPS” demands that there is more emphasis on finding treatments. “We have decades of research, advances in immunotherapies, pain control with paralytics and medications, but we are still suffering horribly,” she says.

She fervently hopes that Celine’s sharing of her experiences will bring “international awareness, and hopefully funding for scientific research”.

References

1. Stiff person syndrome | Hopkins Medicine website
2. SPS panel react to I am: Celine Dion | YouTube
3. Bent not broken autoimmune – Instagram channel
4. Stiff Person Syndrome SPS – Heart to Heart – YouTube channel

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