Hi, my name is Lisa, and I’m a storyteller. I am a Public Artist with ArtworxTO for The City of Toronto for 2021. I’ve worked as an actress, a filmmaker, and a theatre and film producer. Since my illness took over in 2008, I have been exploring my creative passions in the art world. I
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It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was
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I didn’t know I had hypermobile Ehlers-Danlos syndrome (hEDS) until age 26. I was born with congenital cardiac defects, and as a child everyone called me “double-jointed.” I was a very sports-involved tomboy covered in bruises, ace bandages, and casts, and suffered dislocations, ligament and tendon tears, sprains, and strains. I was always fainting with
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Adjusting expectations of myself has been the hardest part of coping with EDS. Just like many people with Ehlers-Danlos syndrome, I remember my childhood as a series of hospital, physiotherapy, and orthodontist appointments. I was forced into wearing kids’ Birkenstocks and doing foot-strengthening exercises I never really liked. It wasn’t until my mid-teens that the
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TW: Contains mention of suicide. I was 5 years old, excitedly cheering on my mom at her softball game, City Park ball fields, Fort Collins, Co. Mom hit the ball, I jumped and cheered with the others in the bleachers, slipped and fell through the bleachers, and life changed. Climbing back up, lifting my pant
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Recently, I was described by a friend as “the healthiest looking sick person” they knew. It was meant as a compliment, and I thanked them. I may look like a fit and well twenty-two-year-old woman, but in actuality, I am living with a disorder that consistently causes pain and hinders my life. It wasn’t until
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I was diagnosed at 42 but all the signs were there from the start. As a child, I would sit in the ‘W’ position, I would often stand with my feet completely flexed so all the weight was on the outside ankles, I could do splits both ways and I got very tired walking. In
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Today, I spent hours on the phone with the pharmacy about a single prescription. This particular prescription has been problematic ever since my doctor first gave it to me. My insurance company has refused to cover it, my pharmacy fights with me every month about it, and I am ashamed to tell people that I
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Finding appropriate healthcare has been a nightmare. Not only do doctors not know about EDS in order to diagnose the disease, they know even less about how to treat the symptoms. My daughter was hospitalized and later diagnosed at the beginning of the opioid crisis (2017). Because of the new rules they “could not treat
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For years, I was told by my doctors that I was healthy, and I certainly tried to be. I exercised regularly, ate a balanced diet, didn’t smoke, and only drank occasionally. However despite all this, I didn’t feel healthy. For five years, I had been experiencing migraines, weight loss, nerve pain, chronic pain, loss of appetite, fatigue, hair loss, gastrointestinal, urological and
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