Challenges faced by patients with mast cell disorders

As an allergist/immunologist, the spectrum of mast cell disorders, including mastocytosis, idiopathic anaphylaxis, chronic hives, and angioedema, is not a new concept. That said, in recent years, we have seen an uptick in patients presenting with a spectrum of symptoms attributed to misbehaving mast cells. Although the medical community has acquired extensive knowledge of these more established diagnoses over time, the newer entity mast cell activation syndrome (MCAS) is not fully understood. This condition—similar to dysautonomia, hypermobile Ehlers-Danlos syndrome (EDS), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and post-Lyme Disease Syndrome—tends to primarily affect women, presents with a multitude of non-specific symptoms, and is frequently misunderstood, misdiagnosed, and/or neglected by the health care system.

Mast cells, crucial components of the immune system, were originally tasked with protecting us from parasite infections. When triggered or degranulated, they release dozens of preformed granules, including histamine, tryptase, prostaglandins, and many other bioactive molecules. Typically, the location of their activation results in what we would now characterize as an allergic flavor of inflammation: itching, hives, swelling, wheezing, and anaphylaxis.

Complicating confirmation of an MCAS diagnosis, diagnostics to test for these mediators are not as straightforward as one would hope. In my office, I see patients frequently who have normal labs, but their symptoms are far from normal. A portion of these patients will experience improvement with mast cell-directed therapies, while others will not. Given a significant gray area in this and the diagnosis of these similar conditions, these patients are medically complex.

To add to the medically challenging aspects of their care, patients affected by these invisible chronic multisystem conditions experience significant challenges in their pursuit of health care. Often, they encounter dismissive attitudes from skeptical health care professionals who never learned about these conditions during medical training. In a medical system where those same professionals are tasked with seeing a new patient every 15 minutes, it becomes much easier to attribute these symptoms to weight, mental health, or hormonal imbalances. But in doing so, we undermine their lived experiences. This in itself is trauma inflicted by the medical system itself.

Not finding help within the health care system, these patients, often with few alternative options, seek validation, hope, and treatments in alternative spaces. Unfortunately, many of these are fraught with unproven, ineffective, expensive, and at times, frankly harmful diagnostics and proposed treatment protocols. Such disillusionment with traditional health care practitioners further endangers patients’ health and well-being by delaying diagnosis and the use of proven treatments.

The existing medical system, driven by profit and insurance protocols, is often insensitive to the needs of patients suffering from less understood chronic disorders. Insufficient funding for the research and treatment of these conditions exacerbates the problem, leaving patients and practitioners with limited resources and understanding to effectively manage these disorders. Moreover, the neglect of diseases primarily affecting women reflects a troubling gender disparity in health care, where women’s health issues are often sidelined, underfunded, and misunderstood.

The dynamic and evolving nature of mast cell disorders necessitates a responsive and adaptive health care approach. Increased funding and research for less understood conditions such as MCAS, dysautonomia, and ME/CFS are imperative for developing effective treatment and management strategies. This will not only improve the quality of health care provided to affected patients.

By acknowledging a human’s lived experiences, even if we cannot fully explain them with known science, health care practitioners can begin rebuilding the trust eroded by years of neglect and misunderstanding. Implementing an empathetic and inclusive health care approach, which respects and responds to the unique challenges faced by patients with chronic multisystem disorders, is essential for improving patient outcomes and satisfaction. The reality is that this will take time and considerable effort.

Mast cell disorders present a broad and complex range of conditions requiring careful and compassionate medical attention and understanding. Addressing the knowledge gaps, systematic challenges, and trust issues faced by patients with less understood MCAS-related disorders is crucial for improving their health care experiences and outcomes. Increased funding, research, and a patient-centric, trauma-informed approach are needed to ensure that all individuals, regardless of gender or the complexity of their condition, receive the comprehensive and respectful care they deserve.

Kara Wada is a board-certified academic adult and pediatric allergy, immunology, and lifestyle medicine physician, Sjogren’s patient, certified life coach, TEDx speaker, and Dr. Midwest 2023. She can be reached at Dr. Kara Wada and on Instagram, YouTube, Facebook, and LinkedIn. She is a national expert, sought-after speaker, advisor, and host of the Becoming Immune Confident Podcast. She is CEO and founder, The Crunchy Allergist and the Demystifying Inflammation Summit, and serves as the director of clinical content for Aila Health.

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