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 quadruple board-certified pediatric and adult allergy and immunology, lifestyle, and functional medicine physician, a Sjögren’s disease specialist, and a Sjögren’s patient herself. She spent nine years on faculty at The Ohio State University Wexner Medical Center, where she served as associate program director of the allergy and immunology fellowship and led the Mast Cell Center of Excellence.

In 2025, she left academic medicine to build the kind of practice she could not find as a patient: the Immune Confident Institute, a national direct-care immunology practice licensed in 27 states. She treats the patients the health care system sends ping-ponging between specialists, people with complex, chronic, multisystem disease including mast cell activation syndrome (MCAS), dysautonomia, Sjögren’s disease, immune dysfunction, and the seronegative and “in-between” diagnoses that do not fit neatly into a single specialty.

Her premise is simple: These patients are not the problem. Fragmented care is. Medicine has become exceptionally good at looking through microscopes while losing sight of the telescope, the bigger picture of the person in front of us. Her work challenges a health care culture that demands compliance when it should assume competence, and aims to make strategic, compassionate immune-directed care the standard, and the exam room a place where patients are finally seen, heard, and believed.

Most of her reach is built outside the exam room. Her YouTube channel drew roughly two million views this past year, and more than 100,000 people follow her work across platforms, including a Sjögren’s community of about 6,600. She founded and hosts the Virtual Sjögren’s Summit, now in its sixth year and drawing some 4,300 registrants worldwide. She appears regularly on national television and in the health press, including Prevention, SELF, Good Housekeeping, WebMD, Medscape, and MedPage Today, and she writes for KevinMD on the diagnoses that live in the shadows and the medical gaslighting that surrounds them.

A TEDx speaker and sought-after keynote, Wada speaks to clinician and patient audiences about complex immune disease, the experience of being disbelieved, and what changes when the physician is also the patient. She is also an unlikely pageant titleholder, having served as Dr. Ohio America 2022 and Dr. Midwest America 2023, and has written about how pageantry sharpened skills medicine rewards but rarely teaches.

She earned her medical degree with honors from the University of Illinois College of Medicine at Peoria and completed internal medicine-pediatrics residency, allergy and immunology fellowship, and clinician educator fellowship at The Ohio State University and Nationwide Children’s Hospital. She lives in Columbus, Ohio, with her medical school sweetheart turned husband, Akira, and their three children.