World Rare Disease Day: Edmonton area Guillain-Barré syndrome survivor shares her story

Fifteen years ago, Holly Helm’s life changed forever.

“It was like life changed within a blink of an eye,” she explained. “I was completely healthy, I was living my life, I had just gotten married, had a baby. I was just looking forward to my future.”

The new mom was diagnosed with a rare disease called Guillain-Barré Syndrome. Essentially, her immune system was attacking her nervous system, impacting her movement. The new diagnosis, also caused her to miss time with her new daughter.

“I almost felt like I was robbed of that time with her, I mean she was a newborn and I couldn’t breastfeed her because of the medication that I was on, couldn’t hold her, I missed her first smile, I couldn’t take her on a walk,” Helm explained.

Helm is just 1 out of 100,000 Canadians currently diagnosed with the rare disease. One expert says that while the exact cause is still unknown, it often shows up after an infection, like the flu.

“We have seen patients where they don’t know what the trigger was, but most often you typically hear about the preceding infection of some kind,” said Donna Hartlem, the executive director of GBS/CIDP Foundation of Canada.

Helm considers herself a survivor. She is now using her time to spread awareness and knowledge of rare diseases, saying it can be difficult to get medical attention for the rare condition.

“If a doctor has never seen a case of GBS before, which many of them haven’t, they may misdiagnose you, they may send you home. It may take a while before your diagnosis, before you are treated, which is a barrier for getting better,” she explained. 

She was able to fully recover from Guillain-Barré Syndrome but is speaking out, wanting to give hope to others with the same disease. 

“Trying to find these people, reaching out to them and giving them hope and showing them that I was where your family member was now here I am and I’ve recovered.”