Living with Marfan Syndrome
Hi, I’m Doré. I’m a therapist, an advocate, and someone who navigates the complexities of chronic illness and dynamic disability. I live with Marfan syndrome, a connective tissue disorder that affects my spine, eyes, heart, and other systems in ways that touch nearly every part of my life. Connective tissue is kind of like the glue that holds your body together and since mine is weakened, my joints, spine and organs do not have the same support or stability.
Spine
Scoliosis is a curve of the spine that can cause pain fatigue and strain on muscles and nerves. In connective tissue conditions. like Marfan syndrome, the spine is less stable so curves are often more severe and more likely to progress. Dural ectasia is when the lining that holds spinal fluid, and surrounds the spinal cord and brain, stretches and balloons outward usually in the lower spine. It's common with Marfan Syndrome, but typically it's asymptommatic. However, unfortunately not for me. It irritates my nerves, disrupts spinal fluid pressure, and causes deep pain nerve symptoms and discomfort that worsens when upright. In my early 30s the dural ectasia got worse and turned into meningeoceles, which are basically little pockets where the stretched lining around my spine pushes into weakened bone and presses on nerves. They happen because the connective tissue that’s supposed to hold everything in place is too weak, so over time the pressure of spinal fluid stretches the lining and slowly wears away the bone, leaving room for these bulges to form.
My surgery was an extensive spinal fusion to stabilize my spine and pelvis and protect my nerves. Hardware was added to support weakened areas reduce abnormal movement and decrease pressure caused by dural ectasia and meningeoceles. The goal was to improve stability reduce pain and prevent further damage. I need to lay down often because dural ectasia makes being upright harder on my body. Sitting or standing increases pressure on the stretched dura and worsens pain and symptoms. Lying down reduces that pressure helps balance spinal fluid and gives my nervous system relief. I have days where the pain is horrfic and occasionally days where I feel like my old self again.
Eyes
My eyes have been through a lot too. Retina detachments happen when the thin layer at the back of the eye that senses light pulls away from its normal position, and if it’s not fixed quickly it can cause permanent vision loss. They’re more common in Marfan syndrome because the tissues in the eye are more fragile, and I’ve had a detachment in each eye. Most recently, one happened as a complication from my spinal surgery. On top of that, I have glaucoma, which is when pressure inside the eye damages the optic nerve over time. My left eye has been especially tough with over 35 different procedures and surgeries on it, and it now has vision loss. I have to though, I have a wonderful team at Cloudbreak Eyecare in Calgary who work relentlessly to restore vision in my left eye and I'm so grateful.
Heart
If dealing with my spine and eyes wasn’t enough, my heart decided to join the party too. In Marfan syndrome the connective tissue in the heart and blood vessels is weaker, so the aorta, the main artery that carries blood from the heart, can slowly dilate over time. This puts you at risk for serious complications if it isn’t monitored. Mitral valve prolapse is also common, where the valve between the upper and lower chambers of the heart doesn’t close properly, which can cause blood to leak backward and make the heart work harder. In 2024 I had open heart surgery, a valve-sparing aortic root replacement, to fix the dilated aorta while keeping my own valve, and since then things have been stable and my heart is doing well.
All this to say, I’m challenging the traditional idea of therapy to make it actually work for the chronic pain I live with every day. I lay down during many of my sessions because my body needs it, and that doesn’t make the work any less meaningful. In fact, honoring your body’s needs makes space for deeper focus, reflection, and healing. I encourage you to do the same. If you want to lay down, stay in your pajamas, eat snacks, or just be as comfortable as possible, I’m here for it. Therapy should meet you where you are, not force you into a mold that makes your body scream. Comfort is part of the work too.
“Disability and chronic illness don’t define a person, but they do shape how they live their life.”
Growing Up with a Brother with Disabilities
Despite all these challenges, my life’s work has been shaped by my experiences and the people I care for. Growing up with a brother who has a developmental disability gave me an intimate understanding of what it feels like to live in a world that doesn’t always understand you. Watching him and my parents navigate systems, social expectations, and the daily grind of life, I realized how often people with disabilities are misunderstood, overlooked, or underestimated.
I started my professional journey in direct care, supporting individuals with developmental disabilities in their daily lives. This included personal care, feeding, administering medications, helping with activities, and ensuring safety and comfort. Through this work, I witnessed firsthand both the struggles and the triumphs of people whose voices are often ignored. I also realized how much impact compassion, patience, and genuine understanding can have.
“Helping someone feel seen and understood is just as important as helping them feed themselves or take their medication.”
Finding My Purpose
Over time, my focus shifted to therapy, where I could combine my lived experience with professional skills to support people more holistically. While my early work was rooted in supporting those with developmental disabilities, my passion has grown to include everyone. Therapy, to me, is about creating space for people to be seen, heard, and supported no matter their background, abilities, or challenges. I want to help people understand themselves, navigate their emotions, and manage life in a way that feels manageable and meaningful.
Walking With You
Every person I work with teaches me something new. Every story I hear reinforces my belief that therapy should be accessible, compassionate, and inclusive. My life experience thus far, both personal and professional, has been about turning experience into understanding, and understanding into action.