Walk hopes to shed light on rare brain condition

A Franco-Ontarian singer diagnosed with a rare disease wants to raise public awareness of a her condition, and help raise money to fund further research.

Céleste Lévis, who has Chiari malformations took part in a walk at Dow's Lake Saturday.

Chiari malformations are a relatively unknown condition that occur when the brain and the spinal cord don't connect properly, causing the cerebellum and brain stem to be pushed downward.

The malformations can result in cerebrospinal fluid being blocked, causing a number of symptoms including severe headaches, difficulty breathing, a slow heartbeat and nausea. Some people who have the condition don't experience any symptoms.

Difficult to diagnose

The symptoms mimic those caused by other conditions, making Chiari malformations difficult to diagnose.

"I often came to Ottawa to the Children's Hospital of Eastern Ontario (CHEO) and also to Toronto. Finally, it was a doctor at CHEO who saw [the malformations]. I had already had an MRI several times, but it was this specialist who saw it," Lévi told Radio-Canada in a French-language interview.

Lévis is director of events and campaigns for the Canadian Chiari Association.

Valérie Arpin, a mother of two boys, also took part in the walk.

"I was diagnosed in 2009. I had symptoms from the age of 14. Big, big, severe headaches. They said I had tension headaches, but that was not really what I was experiencing," said

Arpin said she was relieved when she finally received the diagnosis. She underwent surgery the following year to take the pressure of her brainstem.

The annual walk, now in its fourth year, brings together people who suffer from the disease, and who often feel isolated, Lévis said.

The cause of Chiari malformations is also difficult to pin down. The Canadian Chiari Association wants to raise funds to help with research. This year, the group raised more than $15,000.