Commemorating Rare Disease Day on Feb. 28th @rarediseaseday

CN Tower lights up blue Saturday to commemorate Rare Disease Day

Freelance photographer Natasha Vaney has been suffering from such afflictions as joint dislocations, violent headaches and low blood pressure her entire life.

Doctors thought she may have had Lyme disease or Multiple Sclerosis. It wasn’t until last year that she was diagnosed with Ehlers–Danlos syndrome (EDS), an inherited connective tissue disorder.

“It is a very rare disease – so rare that most people who have it don’t get diagnosed in their lifetime,” Vaney told The Villager.

Vaney’s joint dislocations as a child were misdiagnosed as growing pains. Her EDS diagnosis came after Vaney suffered a fall, which she is prone to in the winter because the cold drastically affects her circulation.

Living with EDS is no walk in the park, she says.

“It has not been easy. I used to be so active,” said Vaney, who played golf, raced sail boats and walked “great distances.”

“Now, I’m afraid I will stop walking, stop getting up, that the pain will get so bad that I will need morphine via an IV and that I will not be able to take a shower – so I try to do the best I can each day.”

This Saturday, Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day, a global health awareness initiative, with the lighting of the CN Tower in blue at sundown. The CN Tower is the first Canadian monument to honour Rare Disease Day. Ehlers-Danlos Syndrome Canada is an organization that provides knowledge, advocacy and support to individuals and their families living with Ehlers-Danlos Syndrome. Toronto won’t be the only Canadian city raising awareness of Rare Disease Day. Science World in Vancouver will be illuminated in blue as well as the sun sets the same evening.

“These fantastic sites light the way for unity across the provinces in showing that they support Rare Disease(s) that affect thousands of families in Canada,” EDS Canada said in a statement. “Ehlers-Danlos Canada is pleased to have arranged this event for our members across Canada. May the support we are receiving this year only grow and glow in more provinces in the years to follow.”

Rare Disease Day serves to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives. Established by the European Organization for Rare Diseases in 2008, Rare Disease Day takes place on the last day of February each year. Since its inception, thousands of events have taken place around the world.

Continue reading CN Tower lights up blue Saturday to commemorate Rare Disease Day.

For further details, visit

For more information about rare disease day, visit

Thank you to Lisa Rainford at the Bloor West Villager for permission to reprint.

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