Opinion

Along with millions of others, I live with MCAS. There is an urgent need for research and support

Mast Cell Activation Syndrome (MCAS) is a debilitating and often misunderstood condition that affects anywhere between two and 17 per cent of the general population. As someone living with MCAS, I have firsthand experience of its profound impact on daily life and the urgent need for greater awareness, research and funding.

MCAS is a chronic, complex multi-organ, multi-symptom disorder characterized by the inappropriate activation of mast cells that are critical components of the immune system. When triggered abnormally, these cells release excessive amounts of inflammatory mediators, leading to a wide array of symptoms ranging from severe allergic reactions, including anaphylaxis, to chronic pain and fatigue. The journey to medical care is often riddled with misdiagnoses as symptoms can mimic those of other conditions like allergies, autoimmune disorders and even psychological conditions.

During a recent presentation I gave at the University of Toronto’s Temerty Faculty of Medicine, I highlighted the lack of understanding and recognition that often surrounds MCAS. This knowledge gap is not merely a medical oversight, it is a call to action.

Paul Anderson, an educator and clinician in integrative and naturopathic medicine in Seattle, Was., emphasizes in his YouTube video that doctors are not taught about mast cell diseases in school. Consequently, they may not think to look for MCAS in practice, further exacerbating the issue.

And it’s true, when I was at my sickest, despite significant findings, a specialist at a well-known and respected hospital in Toronto dismissed my symptoms as psychosomatic and suggested I go on a meditation retreat. This was not only frustrating but also indicative of the neglect within our health-care system. It underscores the urgent need for greater awareness and understanding of complex diseases within the medical community that often go undiagnosed and are becoming more common.

Throughout my journey, not being believed was a constant theme; people and specialists often attributed my symptoms to stress or anxiety, contributing to complex PTSD and major depression.

One of the most significant hurdles for MCAS patients is the scarcity of dedicated research. While conditions like cancer and diabetes receive substantial funding and attention, conditions like MCAS often fall through the cracks. This disparity perpetuates a cycle of ignorance and neglect, leaving patients without effective treatments or hope for a cure.

A recent feature on MCAS in People Magazine brought a glimmer of hope, showcasing the real-life struggles and resilience of those living with the condition. However, media coverage alone is insufficient. We need a concerted effort from the medical community, research institutions and policymakers to prioritize MCAS.

Increased funding is critical. With adequate resources, scientists can delve deeper into understanding the triggers and mechanisms of the condition, leading to better diagnostic tools and more effective treatments. Additionally, there is a pressing need for comprehensive education and training programs for health-care providers to ensure timely and accurate diagnoses.

Support for MCAS patients extends beyond medical treatment. Many face significant social and economic challenges due to the chronic nature of the condition. Employment, education and daily activities can become insurmountable obstacles without appropriate support systems. Advocating for policy changes that provide financial and social support is imperative.

According to Google search trends, interest in “mast cell activation syndrome” has increased significantly over the past two years. This rise in curiosity likely reflects a growing awareness and concern among multiple audiences including the general population and within the medical community. It may also suggest an increase in individuals experiencing symptoms or seeking to understand this complex condition.

The heightened search trend also raises questions about MCAS’s potential connection to long COVID. With symptoms of MCAS overlapping with those of long COVID such as fatigue, brain fog and inflammation, there’s speculation that long COVID may trigger or exacerbate MCAS. However, conclusive evidence remains limited. To fully understand the scale and impact of this debilitating condition and its potential links to long COVID, more funding and research are urgently needed.

By raising awareness and advocating for increased research funding, better education for health-care providers and robust support systems for patients, we can improve the lives of those affected by MCAS. Unlocking resources will not only shed light on the underlying mechanisms but also pave the way for improved diagnosis, treatment, and support for those affected.

Changemakers, decision-makers and advocates who want to learn more about MCAS, contribute to future research initiatives or support this often-underserved community must join forces. Together, we can unmask the mysteries of Mast Cell Activation Syndrome and ensure that no one has to suffer in silence.

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Authors

Emily Foucault

Contributor

Emily Foucault, based in Toronto, is a Patient Advisor and advocate, volunteering with support groups and contributing to health-care initiatives. Emily spent a decade in global agencies like MediaCom and Hill+Knowlton before founding ThinkHatch in 2017, offering fractional marketing support to startups. She has been named Female Entrepreneur of the Year by Startup Canada and was a Finalist for the Notable Woman Award.

You can follow her journey and insights on social media @emilyfoucault or her blog at emilyfoucault.com.

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