In the vast landscape of healthcare, there are conditions that lurk in the shadows, unseen and often misunderstood such as Mast Cell Activation Syndrome (MCAS), symptomatic joint hypermobility and dysautonomia. Like a camera lens focusing on the minutiae of life, a group of dedicated expert doctors are leading the way in exposing these complex conditions including Dr. Leonard Weinstock, Dr. Larry Afrin, author of Never Bet Against Occam, Dr. Tania Dempsey, Dr. Laurence Kinsella, and Dr. Linda Bluestein, alongside dedicated patient advocate Jill Brook. They are collectively creating a showcase bringing these unseen disorders they call The Triad into sharp focus through the lens of a new upcoming film project called “Stealth Syndromes.” The participants and producers need the community’s help to make the film a reality.
The project started in 2019 when doctors such as Dr. Weinstock recognized “so many patients and so few doctors” and “patients knocking down our doors” which motivated them to create a documentary to bring awareness into the public domain. The Chronic Pain Partners (CPP) volunteer media team recently had a chance to learn more about the film during an interview with the nonprofit’s volunteer medical consultant, Dr. Bluestein, and here’s a summary of what we took away on the production efforts. The documentary’s goal, at its core, is designed to render this information easily accessible, ensuring that individuals – patients, families, or clinicians – can acquire a comprehensive understanding of these conditions.
Bluestein says, “It’s really important to get that information out to people when they’re young and they’re able to do things so that we can keep them active and mobile. When they realize their struggles with pain and confusing symptoms in their body is not their fault, that’s the biggest hurdle. Then they begin to understand, research and find ways to self-advocate.”
In the world of medicine, some conditions defy easy categorization and mystify practitioners. Mast Cell Activation Syndrome (MCAS), hypermobility, and dysautonomia form a complex triad that can confound even the most seasoned healthcare professionals. Research suggests there was a marked percentage of MCAS among the cohort with a co-occurring diagnosis of dysautonomia or postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (EDS). Another study in the US concluded, nearly 1 in 3 patients diagnosed with MCAS have comorbid diagnosis of hypermobile EDS (hEDS). Furthermore, according to this study there’s an estimated 17% of the population affected by mast cell disorders alone, so these experts believe that the triad of conditions cannot be ignored any longer.
Dr. Bluestein shared with our team her belief that the medical community will soon be at what she describes as “a social crisis of chronic and complex diseases like MCAS, EDS, and dysautonomia where providers are overwhelmed by the number of people needing care. How are we going to have healthcare workers that can do all the jobs that we need in five or 10 years from now, when people are overall, I think, getting sicker. This is really an urgent problem and a problem that very few doctors recognize.”
She is a pioneer in the field of pain medicine and host of the Bendy Bodies podcast (just releasing its 100th episode) focused on hypermobility issues, and is no stranger to the challenges faced by patients living with these stealth multisystemic diseases. With her expertise and personal experience with hEDS, she understands the urgent need to shine a light on these often-overlooked conditions as she had to let go of her younger self’s dreams of ballet dancing, then again release from her thriving medical career as an anesthesiologist due to joint instability and her inability to perform anesthesia procedures safely anymore. She turned her passions into a pain-reducing purpose for her patients and clients she supports with the complexities of the issues with their connective tissues at her medical practice, Hypermobility MD.
Dr. Bluestein says, “Providers have to start with an open mind. So, hopefully, there’s enough physicians, nurse practitioners, physical therapists, etc. out there with open enough minds that they look at this as something fascinating, they want to learn more about. They may even think of specific patients that they are caring for and wonder if this is why they haven’t gotten better. As some of the few practitioners treating the triad, we see people whose lives have been destroyed, not only by the disease, but then also by how they’ve been treated in the healthcare system.”
Previous collaborative efforts between scientists, researchers and doctors have released new doctor awareness resources such as Hope for Hypermobility (Part 1 and Part 2) where interested healthcare providers earn continuing education credits for learning about hypermobility and multimodal pain management. Bluestein worked on this project as well with the Medical University of South Carolina (MUSC)’s expert team of scientists and researchers (Victoria Daylor PhD, Chip Norris PhD, and Cortney Gensemer PhD) to produce the articles published in 2023. Collaboration is becoming commonplace in the EDS community to foster shared knowledge to advance the common goal of better awareness and understanding. Patient advocates are also coming together with patients in the community to gather and share information on websites and newsletters like EDS S.H.A.R.E. (Sending Helpful Articles Research and Education) where anyone can contribute news or research updates to a growing living library.
About the Hope for Hypermobility CME Articles
Hope for Hypermobility is a continuing education (CE) activity that provides learning objectives for describing and understanding joint hypermobility. The activity is available in two parts and could be shared with anyone on your care team curious to learn more on hypermobility in the two-part series:
- Part 1: An Integrative Approach to Treating Symptomatic Joint Hypermobility
Learning objectives include describing symptomatic joint hypermobility and associated conditions, explaining the physiological basis of pain, and examining diagnostic testing. This part also includes a quiz and CME accreditation. To earn CME credit, participants must read the CME article, complete the quiz, and answer at least 70% of the quiz questions correctly. - Part 2: An Integrative Approach to Treating Symptomatic Joint Hypermobility
Learning objectives include describing the components of multimodal pain management and examining the anticipated outcomes of treatment recommendations.
Led by the team of esteemed doctors, the collaborative triad film project is being funded and supported by the nonprofit organization LDN Research Trust and aims to do just that: to illuminate the interconnected nature of MCAS, hypermobility, and dysautonomia and the profound impact they can have on patients’ lives. Like a carefully composed shot, the film will capture the intricacies of each of these conditions, revealing the hidden layers of inflammation and dysfunction that lie beneath the skin in these invisible illnesses, focused primarily on mast cell disorders. Bluestein shared her desired outcome of the film is “validation and belief for patients’ experiences and symptoms.”
Bluestein says, “We’re going to reach healthcare professionals who we want to educate about these conditions, so that they start to look take a deeper interest in their patients who are really struggling and who they haven’t been able to help. And to really start to understand if they learned about these conditions, they could help more people, which is why most of us went into medicine.”
But these projects are about more than just raising awareness. It’s more about sparking a dialogue within the medical community to challenge long-held assumptions of specialist-focused patient care and redefining our understanding of health and wellness by opening the aperture of an unaware care provider’s eyes to the prevalence of hidden disorders not easy to see. By shining a spotlight on these unseen disorders, these experts hope to empower other medical professionals to better recognize and treat these complex conditions, ultimately improving outcomes for patients worldwide. Their collaborative effort aims to offer a growing library of medical resources in the film’s closing credits for healthcare providers to access information and educational training resources to learn more and be able to receive continuing education credits.
As the film takes shape, it serves as a powerful reminder that sometimes, the most profound truths are often only found in the shadows. As every patient with an elusive chronic illness like those in the triad knows, we can too easily be dismissed and disbelieved and lose hope as a consequence. This film intends to inspire with each frame and case study or patient story, to empower more doctors. In the patient community, many people believe it is the doctors who know how to treat us what is rare, not the conditions. The film hopes to bring these invisible conditions into focus, illuminating the path towards a brighter, more compassionate future for all those affected by MCAS, hypermobility, dysautonomia, and beyond.
How You Can Support the Production of the Film Getting Out There
The team of experts cannot do it alone. They need your help to bring this important project to life on the big screen. Here are a few ways to consider joining the effort and supporting the production:
- Put your name on it with a virtual Brick in the Wall donation where you can opt to have their name or a loved one’s name listed as a supporter once the film is released for as little as $10! You too could show the world what matters to patients, families and care providers in the underrecognized illnesses with your imprint with any level of sponsorship or support here. Every contribution, no matter how big or small, makes a difference. By donating to their fundraising campaign on mcasfund.org, you’ll be directly supporting the production and finishing of the film, from securing filming locations to covering post-production costs and marketing the film to festivals. Your generosity will help them share these important patient stories with the world.
- Help amplify their message by sharing mcasfund.org with your friends, family, and other providers or on social media. By spreading the word about the fundraising campaign, you’ll help them reach a wider audience and inspire others to join the community cause.
- Are you a patient living with MCAS, hypermobility, or dysautonomia? Are you a healthcare professional passionate about raising awareness of these conditions? We want to hear from you! Visit www.mcasfund.org to learn how you can get involved in the production of the film, whether it’s sharing your story, providing expert insight, or lending your support in other ways.
By contributing, you’re not just supporting the production of a film – you’re empowering change from a grassroots level. The expert voices shared in the film already have the challenge of simplifying three very complex disorders into easily digestible sound bites to attract and educate not only the public, but to peak curiosity in medical professionals of both today and tomorrow.
Learn more about how the experts involved came together in Dr. Bluestein’s podcast episode on the film. These doctors graciously agreed to volunteer their time to contribute to the film creation and will receive no compensation. No matter how you choose to participate your support will help them collectively raise awareness of MCAS, hypermobility, and dysautonomia, leading to better recognition, diagnosis, and treatment for patients worldwide. Together, we can make a meaningful difference in bringing these disorders into the spotlight.
