It’s estimated that fewer than 5,000 people in the United States are diagnosed with “Stiff Person Syndrome.” Doctors at IU Health are credited with diagnosing and treating this patient.
By IU Health Senior Journalist, TJ Banes, tfender1@iuhealth.org
When Jane Lees heard the news that Canadian-born singer, Celine Dion was diagnosed with “Stiff Person Syndrome,” she called her a “very brave woman.”
Lees knows firsthand about the rare disease. She was diagnosed in September 2019.
“All of us with Stiff Person Syndrome (SPS) remember the pain that Celine Dion so courageously shared in her announcement. SPS is not for the weak and it doesn’t discriminate. Today I have hope that she is getting the best treatment from her own team and that the world will embrace the journey ahead of her,” Lees said.
Dion announced her diagnosis on Instagram. “While we’re still learning about this rare condition, we now know this is what has been causing all the spasms I’ve been having. Her emotional video was seen by more than 5 million Instagram followers.
For Lees, that means there are more than 5 million more people who now know about SPS. “People who know me and saw the Celine Dion story have said, ‘that’s the same disease that Jane has.’ Three years ago, few people would recognize that. Anything I can do to create awareness means that more people can understand about SPS,” said Lees. As she talked she received an infusion treatment at IU Health Simon Cancer Center, administered by nurse Bailey Davis.
Since her diagnosis, Lees has received intravenous immunoglobulin therapy (IVIg) every three weeks for two days in a row. She says she will most likely remain on the treatment for the rest of her life.
The National Institute of Neurological Disorders describes SPS as a rare progressive neurological disorder that can cause stiff muscles in the torso, arms and legs; greater sensitivity to noise, touch and emotional distress which can set off muscle spasms. It can cause a hunched posture and some people may be unable to walk or move. It affects twice as many women as men. Because the symptoms are similar to other conditions it is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.
“I had deniable symptoms for a couple of years that were never explained. I tripped and fell a lot and had a lot of weakness in my left leg,” said Lees, 60. “I lost muscle mass and weight and I was tired all the time.” In May 2019 she thought she had the flu and ended up in progressive care at IU Health Methodist Hospital – the same hospital where she was born. “They couldn’t find anything wrong but my blood sugar level was over 600 and I had a raging internal infection,” said Lee. She was treated and released.
“I’d go for my annual exams, tell about my symptoms but the bloodwork would come back normal. It was very hard to detect,” said Lees. She was in the care of several IU Health doctors including Dr. Richard Scheer, who specializes in neurology; and Dr. Jonathan Bazeley, who specializes in nephrology. She is now in the care of Dr. Robert Pascuzzi, who specializes neurology.
“Dr Bazeley figured out I had diabetes. At the time I was down to about 87 pounds and couldn’t walk. He had my daughter wheel me to his office and I was directly admitted to the hospital,” said Lees. She was lying in a hospital bed after about three weeks when six neurologists entered her room and told her they had finally found a diagnosis.
“There was so much research that went into my case. Because I was admitted to Methodist Hospital, there was teaching going on and a resident who was researching my case figured it out. When they gave it a name, I wanted to pull out my cheerleader moves because I was so happy, but I also knew that there was a long journey ahead of me – of rebuilding, accepting, and challenging myself,” said Lees. She credits her son, two daughters and two grandchildren with helping her on the journey.
The thing about SPS is that everyone experiences it differently, said Lees.
“It takes from you but it gives something back. You find joy in places you never thought you would because you were too busy. I gave up a career I love but I’m not bedridden. It hurts every day – like you’ve just had the hardest workout of your life and then you walk through cement afterward.”
As part of her rebuilding process, Lees makes it point to help others. She’s part of several support groups and has met Dr. Tara Zier, founder of The Stiff Person Syndrome Research Foundation.
“I’ve learned to appreciate where I am and what I can do – like swimming in the lake with my grandchildren, kayaking, and connecting with others.”
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