It is estimated that less than 5,000 people in the United States are diagnosed with “Stretch 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 that Canadian-born singer Celine Dion had been diagnosed with “Stretch Syndrome,” she called her “a very brave woman.”
Lees knew about the rare disease in advance. She was diagnosed in September 2019.
“All of us with Stiff Person Syndrome (SPS) remember the pain Celine Dion so bravely shared in her announcement. SPS is not for the weak and does not discriminate. Today, I hope that she receives the best treatment from her own team and that the world embraces her journey ahead,” Lees said.
Dion announced his diagnosis on Instagram. “While we are still learning about this rare condition, we now know it is the cause of all the contractions I am experiencing. Her emotional video is viewed by more than 5 million followers on Instagram.
For Lees, that means more than 5 million people now know about SPS. “People who know me and see Celine Dion’s story have said, ‘that’s the disease Jane has.’ Three years ago, few people would have realized it. Anything I can do to raise awareness means more people can understand SPS,” Lees said. As she spoke, she was receiving fluid therapy at IU Health Simon Cancer Center, managed by nurse Bailey Davis.
Since her diagnosis, Lees has been treated with intravenous immune globulin (IVIg) every three weeks for two consecutive days. She said she would most likely continue on treatment for the rest of her life.
The National Institute of Neurological Disorders describes SPS as a rare progressive neurological disorder that can cause muscle stiffness in the trunk, arms, and legs; more sensitive to noise, impact, and emotional distress that can cause muscle spasms. It can cause hunched posture and some people may not be able 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, mental illness, or anxiety and phobia.
“I had undeniable symptoms for a few years that were never explained. “I tripped and fell a lot and my left leg was very weak,” says Lees, 60. In May 2019, she thought she had the flu and ended up in intensive care at IU Health Methodist Hospital – the same hospital where she was born. “They couldn’t find anything wrong but my blood sugar was over 600 and I had a raging internal infection,” Lee said. She was treated and released.
“I will go to the doctor every year, tell about my symptoms but the blood work will return to normal. It’s very hard to detect,” Lees said. She is under the care of several IU Health doctors including Dr. Richard Scheer, who specializes in neurology; and Dr. Jonathan Bazeley, nephrologist. She is currently under the care of Dr. Robert Pascuzzi, a neurologist.
“Dr Bazeley found out I have diabetes. At the time, I was only about 87 pounds and couldn’t walk. He told my daughter to take me to his office and I was taken straight to the hospital,” Lees said. She was lying in bed after about three weeks when six neurologists walked into her room and told her they had finally found a diagnosis.
“There is a lot of research that has gone into my case. Because I was admitted to Methodist Hospital, the teaching was still going on and a resident who was studying my case found out about it. As they named it, I wanted to do my cheers because I was happy, but I also knew that there was a long journey ahead – rebuilding, accepting and challenging myself,” Lees said. speak. She credits her son, two daughters and two grandchildren for helping her on her journey.
The problem with SPS, says Lees, is that everyone experiences it differently.
“It takes yours but it gives something back. You find joy in places you never thought you would go because you were so busy. I gave up a career I loved, but I’m not bedridden. It hurts every day – like you’ve just had the hardest workout of your life and then you’re walking on cement.”
As part of his rebuilding process, Lees has always been interested in helping others. She is a member of several support groups and has met Dr. Tara Zier, founder of the Stiff Person Syndrome Research Foundation.
“I learned to appreciate where I am and what I can do – like swimming in the lake with my grandchildren, kayaking and connecting with others.”
But related story:
Patient: “The extremely rare disease was diagnosed because I was in a teaching hospital” – Some of her symptoms went unrecognized; others were more clear. Ultimately, a team of researchers, residents, and doctors discovered the mysterious cause of Jane Lees’ illness.
The little ball greatly reduces pain for infusion patients – It’s smaller than a tennis ball, but this “therapy” delivers a powerful punch to the infusion patient.
