Ceilidh Shaw brings awareness of Ehlers-Danlos Syndrome to KDSS

Ceilidh Shaw has Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that affects the collagen protein produced in her body.

The Grade 11 student at Kincardine District Secondary School student suffers from EDS Type 3 which is the hypermobility type.

"I have had issues with different double-jointed bones," she says. "I had shoulders dislocating all the time, hips, and knees eventually began popping out as well, so eventually, my family doctor referred me to a genetics specialist and that led me to me being diagnosed this past year."

Ceilidh is not on medication for this disease but takes pain-killers as needed and different vitamins to try and help with certain symptoms. Otherwise, her treatment is just bracing and taping whatever joints need it most, based on the day.

To help bring awareness of this disorder, and because May was EDS month, Ceilidh organized a special EDS Day at KDSS, Wednesday, May 27, urging students and staff to wear black and white in support of those affected. EDS is classified as a very rare disease, which is why those who have it are known as zebras - subsequently, the black and white.

She was also hoping to bring awareness to people at school to help explain why she is always in different slings and braces, and help them understand her life. And she wanted to help inspire other people who may be suffering from similar situations, that living with EDS is very hard at times but it is manageable and there are ways to still live and laugh and find positives in the whole situation.

"The turn-out was amazing at KDSS," says Ceilidh. "Tons of people dressed up to show support! It was such a great feeling, knowing that I spread the word and that they were supporting not just me but EDS in general. Lots of people asked different questions to learn more about the disease, and to get a better understanding themselves.

"People don't really understand how it feels living with this syndrome. I mean people watch me go through it so they know it's a very painful disease but there's no easy way to explain, in words, to a person what it feels like every day. To try and explain it, it's like explaining that for me walking up a flight of stairs is like someone else running a marathon, it just takes everything out of me. I have extreme muscle fatigue, chronic pain, I bruise easily, so mentally I am always having to plan my day, and know my limits as to what my body can handle without falling apart, literally.

"I feel it is important that people understand what I'm going through and how it affects me because EDS is an invisible illness so I don't look 'sick'. It's good that people understand so they know that I am in a lot of pain and I can't always keep up with everything that my friends or peers may be doing, as much as I may want to. Also, during class, I do have frequent bone dislocations, so knowing my peers are aware of my situation helps them understand that I sometimes do need to quietly leave so I'm less of a distraction. This is just something that happens and I can't avoid it."

There is an EDS Foundation that people can look up on-line and donate to, which helps fund research, says Ceilidh. And she has come across one doctor, through Sick Kids in Toronto, who is currently researching EDS Type 3 and specializes in connective tissues.

"I really appreciate everything that the school, my family, friends and everyone has done to help me throughout this whole ongoing process," says Ceilidh. "May is EDS awareness month and I know the month of May will end, but my journey with EDS will not, so all this support helps me so much with learning how to live with EDS!"