EDS ECHO Summit Series: Allergy and Immunology Complications Event Recordings

Watch the presentations from our EDS ECHO Summit Series: Allergy and Immunology Complications Virtual Event

Introduction to Session 1 – Dr. Alan Hakim

Dr. Hakim is an adult certified Consultant in Medicine based in the UK. He has over 25 years of experience in Rheumatology and Translational Medicine, and 20 years of experience in hypermobility-related disorders. In hospital and community clinical commissioning and administration he has worked at Divisional, Director, Executive, and Board levels. Dr. Hakim has published widely in clinical research and education, including over 100 original scientific and review papers, 5 books, and multiple online pages and webinars. He has also held a variety of Principle and Chief investigator positions in pharmaceutical studies related to rheumatic disorders. He is a Fellow of The Royal College of Physicians, London, UK, an Adjunct Associate Professor in Medicine at PennState, USA, and the Director of Education at The Ehlers-Danlos Society.

Our Immune System – Dr. Anne Maitland

Anne L. Maitland, MD, Ph.D., is:
• an Assistant Professor in the Department of Medicine, Allergy and Clinical Immunology at the Icahn School of Medicine at Mount Sinai 
• attending physician in the Chiari EDS center at Mount Sinai South Nassau hospital 
• the Medical Director of Comprehensive Allergy & Asthma Care 

Dr. Maitland serves on committees, addressing mast cell activation disease (MCAD) for the American Academy of Allergy, Asthma, the Ehlers-Danlos International Consortium and the National Academy of Sciences, Engineering and Medicine.

The Immune System Q&A Session

Introduction to Session 2 – Dr. Anne Maitland

Anne L. Maitland, MD, Ph.D., is:
• an Assistant Professor in the Department of Medicine, Allergy and Clinical Immunology at the Icahn School of Medicine at Mount Sinai 
• attending physician in the Chiari EDS center at Mount Sinai South Nassau hospital 
• the Medical Director of Comprehensive Allergy & Asthma Care 

Dr. Maitland serves on committees, addressing mast cell activation disease (MCAD) for the American Academy of Allergy, Asthma, the Ehlers-Danlos International Consortium and the National Academy of Sciences, Engineering and Medicine.

Allergy, Intolerances, Mechanisms and Management – Dr. Matthew Giannetti

This presentation was aired at the live event and will not be shared further.

Disorders of Mast Cells and Mast Cell Activation – Dr. Mariana Castells

Mariana Castells, M.D., Ph.D. is a clinician-scientist with over 30 years of experience in allergy and immunology. Additionally, she is a Professor of Medicine at Harvard Medical School with over 200 publication. She is the Director of the Brigham and Women’s Mastocytosis Center one of the few nationally and internationally recognized centers of excellence which provides diagnosis, management, and treatment options for patients with mastocytosis and mast cell activation disorders, which are rare and potentially deadly disorders currently addressed with Tyrosine Kinase Inhibitors. Additionally, she is the Director of the Drug Hypersensitivity and Desensitization Center at Brigham and Women’s and Dana Farber Cancer Institute which provides over 900 high risk desensitization’s per year for over 20 years to patients with cancer, severe infections and inflammatory diseases who are allergic to their first line therapy, increasing their life expectancy and quality of life.

Hereditary Alpha Tryptasemia (HAT) – Dr. Jonathan J. Lyons

This presentation was aired at the live event and will not be shared further.

Mast Cell Activation and Histamine Intolerance Q&A Session

Introduction to Session 3 – Dr. Clair Francomano

Dr. Clair Francomano received her M.D. from Johns Hopkins University School of Medicine and completed her training in Internal Medicine and Medical Genetics at Johns Hopkins. After serving on the full time faculty at Johns Hopkins and in the Intramural Research Program of the NIH, she joined the Greater Baltimore Medical Center in 2005 as Director of Adult Genetics at the Harvey Institute of Human Genetics. Dr. Francomano has been involved in the care of patients with Ehlers-Danlos syndrome throughout her career. She is currently a professor of medical and molecular genetics at the IU School of Medicine and director of the Residency Training Program in Genetics at IU. 

Immune Dysfunction in Hypermobile Spectrum Disorder and Ehlers-Danlos Syndromes: Beyond Mast Cell Activation Disease – Dr. Anne Maitland

Anne L. Maitland, MD, Ph.D., is:
• an Assistant Professor in the Department of Medicine, Allergy and Clinical Immunology at the Icahn School of Medicine at Mount Sinai 
• attending physician in the Chiari EDS center at Mount Sinai South Nassau hospital 
• the Medical Director of Comprehensive Allergy & Asthma Care 

Dr. Maitland serves on committees, addressing mast cell activation disease (MCAD) for the American Academy of Allergy, Asthma, the Ehlers-Danlos International Consortium and the National Academy of Sciences, Engineering and Medicine.

Autoimmune Rheumatic Disease and Ehlers-Danlos Syndromes – Dr. Clair Francomano

Dr. Clair Francomano received her M.D. from Johns Hopkins University School of Medicine and completed her training in Internal Medicine and Medical Genetics at Johns Hopkins. After serving on the full time faculty at Johns Hopkins and in the Intramural Research Program of the NIH, she joined the Greater Baltimore Medical Center in 2005 as Director of Adult Genetics at the Harvey Institute of Human Genetics. Dr. Francomano has been involved in the care of patients with Ehlers-Danlos syndrome throughout her career. She is currently a professor of medical and molecular genetics at the IU School of Medicine and director of the Residency Training Program in Genetics at IU. 

Autoimmune Rheumatic Disease Q&A Session

Introduction to Session 4 – Courtney Rabb

Courtney has been a member of The Mast Cell Disease Society’s board of directors since 2017 and currently serves as the Vice-Chair of Community Engagement. She also has been a member of the EDS Society’s Community Coalition since 2018.

As a patient with a family history of MCAD, EDS, and Dysautonomia, Courtney is passionate about rare disease advocacy as well as raising support for research to advance knowledge and treatment options for these comorbid diseases. Additionally, Courtney writes a blog, A Rare Normal to help raise awareness about living with these diseases.

How to Talk to Your Physician and Make the Most Out of Your Doctor Appointments! – Valerie Slee

I have served as either the Vice-Chair (2002-2009) or Chair (2009 to present) of the Mast Cell Disease Society, Inc. for the past 19 years. I have had mast cell activation syndrome since childhood, so leading this organization this has been an incredibly fulfilling volunteer opportunity for me. I have also been a pediatric nurse for 46 years in various settings, including pediatric oncology. I graduated from Syracuse University with BSN in 1975. I am married to an amazing husband, have three terrific children and four wonderful grandchildren.

Throughout the years, I have been tremendously humbled working with world class physicians as well as patients and families. I have learned so much about the many presentations of mast cell diseases, and the tremendous suffering that patients and families endure. The recognition of the role that comorbid conditions play in this suffering has changed the diagnostic and treatment journey for many patients, with much better outcomes. I am honored to be asked to present to The Ehlers Danlos Society and look forward to further collaboration between our organizations.

Coping with the Challenges and Fears of MCAS – Courtney Rabb

I have served as either the Vice-Chair (2002-2009) or Chair (2009 to present) of the Mast Cell Disease Society, Inc. for the past 19 years. I have had mast cell activation syndrome since childhood, so leading this organization this has been an incredibly fulfilling volunteer opportunity for me. I have also been a pediatric nurse for 46 years in various settings, including pediatric oncology. I graduated from Syracuse University with BSN in 1975. I am married to an amazing husband, have three terrific children and four wonderful grandchildren.

Throughout the years, I have been tremendously humbled working with world class physicians as well as patients and families. I have learned so much about the many presentations of mast cell diseases, and the tremendous suffering that patients and families endure. The recognition of the role that comorbid conditions play in this suffering has changed the diagnostic and treatment journey for many patients, with much better outcomes. I am honored to be asked to present to The Ehlers Danlos Society and look forward to further collaboration between our organizations.

The Diagnostic Journey Q&A Session

Introduction to Session 5 – Dr. Alan Hakim

Dr. Hakim is an adult certified Consultant in Medicine based in the UK. He has over 25 years of experience in Rheumatology and Translational Medicine, and 20 years of experience in hypermobility-related disorders. In hospital and community clinical commissioning and administration he has worked at Divisional, Director, Executive, and Board levels. Dr Hakim has published widely in clinical research and education, including over 100 original scientific and review papers, 5 books, and multiple online pages and webinars. He has also held a variety of Principle and Chief investigator positions in pharmaceutical studies related to rheumatic disorders. He is a Fellow of The Royal College of Physicians, London, UK, an Adjunct Associate Professor in Medicine at PennState, USA, and the Director of Education at The Ehlers-Danlos Society.

Community Voices: Living with hEDS, MCAS & a Low Histamine Diet – Kate Robinson

Kate is currently a student undertaking a double degree in Law and Criminology. Her background is in social sustainability, working in the corporate, consulting and not for profit sectors. In the past, she has run her own microbusiness as a boutique caterer and currently manages a low histamine cooking blog and private forum for others with EDS, POTS and MCAS.

Allergy and Immunology: Gastrointestinal Manifestations of Mast Cell Disorders – Dr. Matthew Hamilton

Matthew Hamilton, M.D., focuses on intestinal inflammation and is an expert in the diagnosis and management of patients with mast cell disorders. He is an Assistant Professor of Medicine at Harvard Medical School and the director of translational research at the Brigham and Women’s Hospital Crohn’s and Colitis Center. As the lead gastroenterologist at the BWH Mastocytosis Center, he leads several translational studies to better define mast cell activation syndrome and to identify diagnostic biomarkers. He has completed a 5-year NIH career development award and has been supported by several industry grants.

Inflammation, Pain, and Urogynaecological Disorders – Prof. Vik Khullar

Prof Vik Khullar is a subspecialist consultant urogynaecologist at St Mary’s Hospital, Imperial College Healthcare NHS Trust, London and Professor of Practice (Urogynaecology) for the Faculty of Medicine at Imperial College, London, United Kingdom.

Prof Khullar’s clinical interests include quality-of-life issues, pelvic pain, Ehlers Danlos Syndrome and its effect on the bladder and pelvis, surgical treatment of urinary incontinence and vaginal prolapse, and topics related to urodynamics.

GI and Urogynecological Disease Q&A Session

Please note that these presentations and materials are provided for your personal, educational use. They remain the intellectual property of the presenters with all rights reserved, and cannot be reproduced without permission. The Society is not responsible for the content of presentations.