Yorkregion.com - Vaughan - Fighting back against rare auto-immune disease
Fighting back against rare auto-immune disease
LAUREN RICCI: Vague symptoms later led to months in intensive care for Maple resident, 25.
Vaughan
May 17, 2008 12:26 AM
Walk at Kortright Centre raises awareness about Guillain-Barre Syndrome
By: Michael Power
At first, the condition that would see Lauren Ricci in intensive care for months started with symptoms so vague it appeared to be just a flu bug.
In 2004, the Maple resident, then 21, had not felt well for about a month and also developed a rash.
“Just really strange symptoms, but nothing really added up,” Ms Ricci said.
One evening her toes became numb and a doctor at a walk-in clinic suggested she likely had poor circulation.
But by the following morning her legs were numb up to the knee. At 2 a.m. the next morning she was numb from the hips down.
Soon after, she had a diagnosis. Ms Ricci had Guillain-Barre Syndrome, a relatively rare and little-known disease of the auto-immune system.
The condition involves a person’s antibodies attacking his or her peripheral nerves, causing those nerves to function improperly. The illness can be severe and involves paralysis that travels up the body.
The condition forced Ms Ricci onto a respirator. She spent two-and-a-half-months in the intensive care unit at York Central Hospital and went through rehabilitation to regain the ability to perform basic tasks such as sitting up and walking.
“I was very determined, especially to get out of rehab,” said Ms Ricci, now 25. “I just wanted to go home.”
Last year, Ms Ricci began an annual walk to raise money for — but also awareness of — Guillain-Barre Syndrome. The condition is largely unknown and many of the 100 people who attended the walk were friends, family and those who have had the illness.
Ms Ricci has organized a walk this year on May 25 at Vaughan’s Kortright Centre, at Islington Avenue and Rutherford Road.
The event features a 5-kilometre walk and a 1-km family route.
Although the event this year has no fundraising goal, Ms Ricci hopes about 200 people attend.
The condition remains rare enough that many general practitioners could spend their careers without seeing a case, said Stouffville resident Susan Keast, executive director of the Guillain-Barre Syndrome Foundation of Canada.
Perhaps two people in every 100,000 develop it, she said, making efforts to raise awareness of the condition all the more important.
Guillain-Barre Syndrome is most often an acute condition that hits people fast, said Ms Keast, who was diagnosed in 1989.
“It’s like being in a car accident,” Ms Keast said. “Your life changes in a matter of hours.”
A chronic counterpart to the condition also exists, called Chronic Inflammatory Demyelinating Polyneuropathy.
Although some people can die as a result, almost all those who get Guillain-Barre Syndrome make a complete — or almost complete — recovery with treatment, said Warren Goldstein, chief of neurology at York Central Hospital.
The hospital sees a handful of cases each year, Dr. Goldstein added.
Symptoms include numbness or weakness and can affect the nerves used when breathing, forcing patients onto respirators, he said.
Often, a viral illness or other infection comes before a round of Guillain-Barre Syndrome, which doctors believe stimulates the body to produce the antibodies that cause the disease.
Ms Ricci’s feet are still numb. She has a scar on her neck from a breathing tube and another scar on her stomach from a feeding tube while in the hospital.
The walk May 25 is largely to raise awareness of Guillain-Barre Sydnome, and the earlier the illness is detected, the less likely a person will suffer permanent nerve damage, Ms Ricci said.
“It (the walk) is also to promote awareness, because nobody knows about it,” she said.