Recognizing the Intersection of Stress and Hope

April 16, 2024

Shannon Bennett, RARE Concierge Patient Navigator for Global Genes and mother to a daughter diagnosed with a rare disease, talks about balancing stress and hope during National Stress Awareness Month and National Month of Hope.

Those affected by rare disease know that there is never a shortage of stressful circumstances. Whether you’re still on your diagnostic odyssey or have been diagnosed for years, stress is a universal experience in the rare disease space, regardless of where you are in the journey. Lack of scientific understanding, coupled with the constant fear of the unknown, can lead to feelings of isolation and deep despondency.

April is National Stress Awareness Month. Interestingly, April is also the National Month of Hope. What a fascinating dichotomy! In my experience as the mother of an ultra rare little girl, I’ve learned that there is no better antidote for stress than hope.

In 2015, my daughter Kenzie was born with a condition called Megalencephaly Capillary and Polymicrogyria Syndrome (MCAP). At the time, there were roughly 200 documented cases worldwide and very little information available regarding the syndrome, or what our family’s future might look like. I however, was fortunate enough to be quickly connected with an online community of other MCAP families. Connecting with other people on the same rare disease rollercoaster who “get it” was exactly the type of hope I was in need of.

Fast forward nearly 10 years later, and I’ve learned a great deal about stress and hope in rare disease. If not for Kenzie’s diagnosis, I wouldn’t have many of my closest friends or amazing colleagues. Out of the immeasurable amounts of stress, has evolved a passion for leading and helping others that I didn’t even know I had. I’ve now found myself working as a patient navigator for Global Genes. Years of stressful appointments, lack of answers and many bleak prognoses has brought me here, to the occupation of professional hope dealing. 

Global Genes’ Patient Support Service

RARE Concierge serves the rare disease community as a central hub for hope, providing understanding as well as connection to a wide range of resources and support. The Patient Services Team is ready to meet families at the intersection of stress and hope with empathy, understanding and connection. There is a light in every darkness and holding on strong to that belief, is the very epitome of hope. Stress is no match for that. Happy April! 

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