CN Tower Will Have Blue Lights to Commemorate Rare Disease Day
This Saturday (2/28) Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day with the lighting of the CN Tower in blue at sundown. EDS is considered to be a rare disease; but experts say it is more prevalent than once thought – because it’s rarely diagnosed! To learn more about prevalence, watch Dr. Neilson’s video here.
“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.
Vaney says that while those who live with EDS are very fragile, they do not want any pity.
“I have had several people who think we are physically challenged. We only need help once in a while,” she said. “If you could hold the door open for anyone with a disability we would appreciate it and say thank you. I am so grateful to all the help I have received within this community from the grocery stores to my many friends, and strangers. My cup runneth over with kindness and generosity.”
Vaney is still able to enjoy walking in High Park, although the snow proves a challenge. She relies on walking poles in the park and a walker on the sidewalk, but it’s too tricky in the snow.
EDS is extremely rare. An inherited disease, those who have it share similar physical characteristics, Vaney said. It is a degenerative illness that is aggravated by a person’s age. “We have good days and very bad days, but we are living with EDS,” said Vaney, who added that unlike cancer, EDS has no remission.
Vaney says a support group, such as EDS Canada, helps those living with the disease feel not so alone.”
For further details, visit www.ehlers-danlossyndromecanada.org
For more information about rare disease day, visit www.rarediseaseday.org
This is a notable way to conclude “Rare Disease Month” and promote Ehlers-Danlos Syndrome Awareness in Canada. Preparations have started for EDS Awareness Month in May.
More about EDS Support Groups and EDS Educational Webinars at: www.edsawareness.com
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