Living with Rare Disease – Ingrid’s story

Ingrid Kovitch shares her experience living with a rare disease and how she is contributing to the future of research.
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As a mother of four, running a medical practice and playing high-level sports, I have tried to lead a healthy and active life.

But about nine years ago, I started to notice alarming changes in my body – symptoms that started as muscle weakness progressed and increasingly affected my day-to-day activities. At the time, I blamed my struggles on a recent injury and on being out of shape. After a fall down a flight of stairs, I was referred The Neuro where a series of tests revealed I have what appears to be a rare – and puzzling – neurological condition. 

Today, there is little of my life that has not been dramatically affected.

I have gone from running marathons to needing leg braces and canes to walk. I use a machine to help me breathe when I lie down. I have suffered a cardiac arrest, and now have an implantable defibrillator. I have been treated in the ICU over 25 times in the past few years.

But more distressing than any of this is my constant concern about the genetic causes of this disease, the implications that it has for my children, and what their futures might hold.

With little control over my condition, I was inspired to take an active role in my care.

After meeting with Dr. Jason Karamchandani at The Neuro, I decided to contribute to the greater good by offering biological samples, genetic data and my clinical story to The Neuro’s Open Science Biobank (C-BIG).  Open Science fosters cooperation and collaboration. This in turn increases the likelihood of meaningful progress towards new treatments that can have significant and concrete effects on all of our lives. 

Knowing that I have contributed – in my own way – to advancing scientific knowledge that will deliver cures to patients gives me tremendous solace. I believe it can provide the same comfort and sense of empowerment to all those who choose to participate. My hope is that Open Science will speed up discovery in time to help with my own disease. And if not, in time for my four children. 

Take part in Open Science at The Neuro:



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The Neuro (Montreal Neurological Institute-Hospital) is a bilingual academic healthcare institution. We are a McGill research and teaching institute; delivering high-quality patient care, as part of the Neuroscience Mission of the McGill University Health Centre. We are proud to be a Killam Institution, supported by the Killam Trusts.



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