Published: 20/11/2016 Tags: Ehlers-Danlos in the News

‘Finding my miracle’: The hidden struggles of living with an invisible disease

At 18, Catherine Richardson’s life was all planned out: she was getting amazing grades in her first semester of university, pursuing her dream of being an occupational therapist, and working part-time as a dance instructor. Everything was going according to plan – until she came down with the flu.

“It wasn’t even a bad flu – it was a good, really minor flu,” said Richardson, now 25, from her Port Moody, B.C. home. “I just never got better.”

Months after she should have recovered, Richardson suffered several bouts of nausea, got full easily, constantly had an upset stomach, and was rapidly losing weight.

An official diagnosis of the chronic, genetic disease Ehlers-Danlos Syndrome (EDS) wouldn’t come until more than five years later, but the world Richardson had spent her entire life creating was beginning to fall apart.

Over the next seven years, this inherited disorder would force her to drop out of school, quit her job, give up her career dreams, and stop eating food entirely.

“I really did have my life all sorted and planned out – and everything was pulled out from under me,” recalls Richardson. “It was really hard, making that adjustment to knowing I was not going to live the life I thought was going to live.”

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