MCAS

 

TMG welcomes Mast Cell Activation patients

 

The Translational Medicine Group (TMG) was formed by Dr. Mozayeni to focus on the inflammation host response, building on his training and research in inflammatory and/autoimmune diseases. Inflammation may consist of innate immunity or more specific immunity. Mast Cell activation is an example of the innate immune response. And we have learned from the work of Dr. Afrin and others that this immune response may present in may different ways and with many symptoms.

TMG has been preparing for over one year, with the help of an exceptionally well informed MCAS patient researcher, to learn and put into practice, this new information in order to help others suspected to have or recently diagnosed with Mast Cell Activation Syndrome.

Our expertise derives from the evaluation and management of complex inflammatory conditions characterized by patterns of multiple symptoms and a wide variety of diagnoses, has led to an appreciation of mast cell activation as a major cause of many symptoms and diagnosed conditions. Recognizing that the majority of our patients with chronic inflammation have mast cell activation has enabled us to greatly improve the care of our patients.

Dr. Mozayeni’s expertise comes from a physician-scientist medical science and translational medicine training background in clinical and research training programs and fellowships in Rheumatology and Molecular Immunology at Yale and the National Institutes of Health – both centers of excellence for translational medicine. But even more importantly, he feels that if he follows his patients and learns what they need for him to learn, he is able to advance medical science. He has helped to advance several areas of medical science, from transplantation immunology, vascular inflammatory diseases, and autoimmune diseases that may be due to chronic infections, to chronic infections and other triggers driving the innate immune response, including the triggering and activation of mast cells. These various conditions may represent varying host responses to common triggers. The variability in the host responses presents diagnostic challenges to all but the most experienced clinicians who can recognize the common patterns.

Dr. Mozayeni has ongoing support from Dr. Afrin; we try to improve our practices drawing on Dr. Afrin’s experience and advice on a range of topics from specimen collection to clinical care guidelines.

Mast cell activation syndrome is an ‘emerging’ illness – while it may be on the rise, it is emerging not necessarily as a new kind of disease, but emerging from a lack of understanding. Increasingly, but still small in number, clinicians are learning to recognize the subtle features of mast cell disorders. Because grant money is not yet available to study the problem, universities are downplaying its importance.

A big part of our work in gearing up for suspected mast cell activation patients has been to enhance our ability to properly diagnose patients by collecting and handling specimens properly and in the best possible way to confirm the diagnosis. For example, specimens for heparin levels and prostaglandin D2 must be handled very carefully, being sure to chill the specimens quickly upon collection.

Often, some therapy has to be started before diagnosis is complete – a diagnostic therapeutic trial may be needed to help diagnose the condition. This need to treat has to be balanced with potential to mask definitive diagnostic tests that may be necessary if the initial attempts fail. Each patient will present with different needs and priorities that will determine the risk to benefit ratio of every considered therapy.

We are fastidious about data collection, having built a custom clinical data collection and visualization platform named CareVector, to help improve the clinical science of how to take care of mast cell activation patients. And, we have a CLIA certified lab to evaluate biofilms and blood smear components. Our lab has provided entirely new insights in the care of our patients. We are about to launch some new confocal laser microscopy methods in our lab to evaluate mast cells and learn how they are activated. The data collected in this manner will be part of a University based research protocol under an IRB panel and this will generate ongoing new insights about this complex condition.

Finally, to work with you and help us meet your needs, we have on our team, a recovering severe mast cell patient to help us work with you – acting as an advocate for you and a research assistant for us to help us apply all available knowledge to your care. This individual is singularly well qualified not only by the duration and severity of her illness, but by her dogged perseverance and intellect that has allowed her to amass and communicate to me and others a wealth of knowledge about mast cell activation syndrome. 

I am grateful to have been blessed with her choosing me to help her and I have pledged to help her do whatever is needed to recover her life – in the course of this collaboration we have seen her improve and help me find powerful new ways to help a large number of my patients who had not even realized that mast cell activation was playing a big role in their illness. 

The research and  advocacy work will expand and move forward independently in the Foundation for Study of Inflammatory Disease (a non-profit) informed by a registry and ‘big data’ project to inform better care pathways. It is important to incorporate patient preferences and insights into evidence based medicine and FSID seeks to do that in the best possible way to gather and keep current with patient insights.

If you wish to be considered as a new patient for consultation and or management of your condition, here are the next few steps: 1) click this link for the New Patient Form. 2) receive an email from our patient coordinator, who is a herself, a mast cell patient we have retained to be your patient advocate and help us obtain important patient feedback to meet your needs with administrative and medical protocols and research to serve patients like you. 3) read the information packet and complete the forms provided with her assistance. 4) obtain electronic copies of all your relevant medical records especially any lab tests done over the past few years that you feel may be relevant. 5) wait for us to review your case, and invite you for a new patient evaluation. 6) schedule an appointment.

For mast cell patients we have, for the time being, expanded our capacity to accommodate 1-2 new patients per week depending on our capacity. This practice already has a wait time of several months for our other types of patients. However, we are making a special exception for mast cell patients.

Continue to New Patient Information

Related Link: Foundation for the Study of Inflammatory Disease