2022 Global Learning Conference – Day 2

Watch the presentations from Day 2 of the 2022 Global Learning Conference

Coping With A Diagnosis – Dr. Paldeep Atwal

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Dr. Atwal is a board-certified clinical and medical biochemical geneticist and director of Atwal Clinic for Genomic & Personalized Medicine, a concierge genetics clinic. In addition, he serves as Medical Director of Genetic Services at Everly Health Solutions (formerly known as PWNHealth), a virtual healthcare company. Previously he served as Medical Director for the Individualized Medicine Clinic at Mayo Clinic FL on the Jacksonville campus. He received his medical degree from the University of Glasgow, and initially trained in hospital internal medicine with The Royal College of Physicians at Glasgow Royal Infirmary in Scotland. He completed his genetics fellowship at Stanford University and sub-specialty biochemical genetics fellowship at Baylor College of Medicine where he was involved in developing a clinical metabolomic profiling test. He holds diplomas in structural molecular biology and forensic medical science and an MBA specializing in healthcare administration. 

Brain-hacking the Psychological Pathways That Maintain Anxiety and Depression – Dr. Chad Shepherd

Dr. Chad Shepherd is a Clinical Psychologist, part of the Psychology Team within the London Hypermobility Network. He has special interest working with HSD (Hypermobility Spectrum Disorder)/hEDS (hypermobility Ehlers-Danlos Syndrome). He works both face-to-face and online with adults and children helping them address chronic pain, fatigue, poor sleep, physical health problems, chronic stress, anxiety, low mood, trauma and low self-esteem. He draws upon a wide range of therapies including Cognitive Behavioural Therapy (CBT), (Acceptance & Commitment Therapy (ACT), Compassion-Focused Therapy (CFT), and Eye Movement Desensitization Reprocessing (EMDR).

‘Regulate’ – The Physiology of Dysregulated Emotions and how to Tame Them – Dr. James Kustow

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James Kustow, a Consultant Psychiatrist interested in the relationship between hypermobility and mental health, will take us on a fascinating journey of the body-mind system. 

After overviewing how and why emotions are particularly vulnerable to dysregulation in EDS/HSD, he will take a deep, but swift, dive into the physiology of emotions and stress. Through a captivating tour of how our systems respond to (perceived) threats, he will highlight the central role of the autonomic nervous system and, in particular, the vagus nerve. He will explain how activating (or stimulating) the vagus can powerfully calm the body and mind, countering the ‘fight or flight’ response. He will introduce cutting-edge, physiologically underpinned ‘hacks’ to help you take more control of your emotional world. 

Dysregulation of emotion usually serves as an indicator of a system under strain. Left unchecked this can manifest as physical and mental illness, and cause relationship disturbance. 

The Role of Upper Extremity Surgery in Patients with Joint Hypermobility/EDS – Dr. William Ericson

Dr Ericson FAAOS FACS FAENS is an award winning board certified orthopedic hand surgeon with a special interest in painful conditions that do not show on standard diagnostic tests, which includes joint instability, tendon subluxation, and subtle peripheral nerve problems. He is a graduate of MIT and Harvard Medical School and has the largest operative experience with EDS patients in the US. 

Foot and Ankle Update – Dr. Patrick Agnew

Dr. Agnew served a Podiatric Surgical residency. This was the most competitive type of Podiatric residency. His residency director, Dr. James Ganley, was widely considered the world’s leading authority in pediatric podiatry. Dr. Agnew is board-certified in foot and ankle surgery. Dr. Agnew’s memberships include the Medical and Scientific Board of The Ehlers-Danlos Society, the American Podiatric Medical Association, the Virginia Podiatric Medical Association, the Hampton Roads Podiatric Medical Society, and the Association of Military Surgeons of the United States. He is a past president of the American College of Foot and Ankle Pediatrics and also the Hampton Roads Podiatric Medical Society. Academic appointments include Adjunct faculty Temple University School of Podiatric Medicine, and he is the founder and director of the Eastern Virginia Medical School Podiatry Residency. He is a manuscript reviewer for the journal of the Association of Military Surgeons of the United States, Military Medicine. He also is the pediatrics section editor of The Journal of Foot and Ankle Surgery. 

Dr. Agnew is a Captain in the United States Navy retired reserve. He was decorated for service during Operation Desert Shield and served as active duty in the International War on Terror and Operation Enduring Freedom. Hobbies include surfing, Tang Soo Do (“Korean karate”), scuba, and skiing/snowboarding. 

After completing pre-medical studies as a member of the swim team at Montgomery College and a student senator at Old Dominion University, Dr. Agnew attended the Pennsylvania College of Podiatric Medicine where he earned four research awards and the clinical award for the highest degree of clinical proficiency in the class. He served as vice president of the class. 
Dr. Agnew served a Podiatric Surgical residency directed by Dr. James Ganley, who was widely considered a leading authority in pediatric podiatry.  Dr. Agnew has been board certified in Foot and ankle surgery since 1990. He was trained in microvascular surgery at the Uniformed Services University of Health Sciences. 

Dr. Agnew’s memberships include: Medical and Professional Board of the international Ehlers-Danlos Society, the American Podiatric Medical Association, the Virginia Podiatric Medical Association, the Hampton Roads Podiatric Medical Society, and the Association of Military Surgeons of the United States.  

Psychology & Orthopedic Management Q&A Session

The Challenges of Living with a Rare Type of EDS – Dr. Serwet Demirdas

Dr. Demirdas is a clinical geneticist in at the Erasmus Medical Center in Rotterdam, The Netherlands, who has several publications concerning clEDS and other types of EDS. In her clinical practice she sees many patients with different types of EDS while working together with several disciplines through an established clinical pathway within the Erasmus Medical center. The professionals involved in the clinical pathway have received the qualification of “Center of Expertise” within the Netherlands. 

Dr. Demirdas is also part of the EDS International Consortium and takes part in the working group for the rarer EDS types. She coordinates the research for clEDS and vEDS in the Netherlands, and is working closely with medical professionals in the Netherlands, the UK, Belgium, and France. 

Supporting Families of a Child With a Rare Disease – Maureen Galindo

Maureen is a pediatric genetics nurse in Southern Arizona, where she has been working with the pediatric rare disease population for 9 years. She assesses children with special health care needs, providing families with individualized genetic education and counseling. 

Looking Ahead: The Potential For Gene Therapies – Dr. Christina Laukaitis

Christina Laukaitis is an associate professor in clinical genetics.  After earning her MD and PhD from the University of Illinois, she completed a residency in Internal Medicine at St. Vincent Hospital in Indianapolis, IN and a Medical Genetics fellowship at the University of Washington. She is board certified in Internal Medicine and Medical Genetics. She joined the faculty at the University of Arizona College of Medicine in 2008 and moved to Carle Health and the University of Illinois in 2021. 

Navigating The Workplace – Emily Block

When Emily Block, OTR/L was frustrated with the way people with chronic illness were treated, she decided to be part of the change she wished to see. She started a telehealth occupational therapy business, Empower OT, where she supports the needs, goals, and wellness of her chronically ill clients. She advocates for occupational therapy having a greater role in treating patients with chronic illness, especially in the areas of sensory processing, vocational rehabilitation, and healthcare management. Emily received a kinesiology degree from Cal Poly, SLO and earned her masters in occupational therapy through Tufts University’s Boston school of Occupational Therapy. She had the honor of contributing to the highly acclaimed patient guidebook Disjointed (edited by Diana Jovin). Emily has been active in patient advocacy at the individual, local, state, and national levels since 2008. She’s excited about how telehealth is making healthcare more accessible for many underserved populations! 

Building Your EDS & HSD Toolkit – Scarlett Eagle

Scarlett Eagle has been passionate about helping others with EDS and HSD since being diagnosed with hEDS in 2012. She graduated summa cum laude with honors from Iowa State University with a bachelor’s degree in genetics and a minor in statistics. While in school, Scarlett planned and hosted Iowa State University’s first Rare Disease Day and founded a Rare Disease Awareness Club in affiliation with the National Organization for Rare Disorders. She also developed a research project examining the role of microRNAs in the development of hEDS using fruit flies as a model organism. 

As Community Engagement Coordinator for The Ehlers-Danlos Society, Scarlett provides information, resources, and support to people with EDS and HSD around the world. She does this through the Helpline, Inspire, and Virtual Support Groups. She also manages volunteers and the Global Affiliation Program. 

The Challenges of Living With A Rare Disorder & Young Adulthood Q&A Session

Bruised, Bleeding, and Broken: Cutaneous Presentations in EDS – Dr. Mark Lavallee

Dr. Lavallee is a board certified family medicine, sports medicine, non-operative orthopedist who has championed the clinical care of those with Ehlers-Danlos syndrome, hypermobile athletes, and strength sports for over 28 years. He currently his medical practice out of UPMC in Harrisburg, PA. He currently is chair of USA Weightlifting Sports Medicine and member of the medical committee of the International Weightlifting Federation. He is  an assistant clinical professor at Drexel University School of Medicine. His past affiliation include 15 years with University of Notre Dame as volunteer team doctor and 7 years as head team physician at Gettysburg College. His research interests include Ehlers-Danlos syndrome, strength sports, Dr. Lavallee enjoys a robust life, lifting weights, long distance open water swimming, restoring antique Jeeps, despite having classical type EDS. He enjoyed raising his two sons, one of which had EDS! 

HSD, EDS, and Bleeding Disorders: Coincidence or Comorbid? – Dr. Rebecca Schaffer

 

Dr. Schaffer is a faculty member at the Arizona School of Dentistry & Oral Health, where she provides care and teaches dentistry to residents and dental students. Her area of expertise is with patients with special needs, chronic pain and complex medical histories. She also owns a private practice in Phoenix. She is a board-certified specialist in orofacial pain, and a Diplomate, the American Board of Orofacial Pain. 

She received her BS in biology from SUNY Binghamton and her DDS from Columbia University, College of Dental Medicine. After completing her residency at Hackensack University Medical Center in New Jersey, Dr. Schaffer maintained a mobile practice, caring for people who were homebound, hospitalized, residing in nursing homes, or otherwise unable to seek traditional dental care. She returned to academia after ten years in practice, earning a post-doctoral fellowship in treating people with complex medical problems, orofacial pain and infectious disease (HIV/AIDS).

The Muldowney Protocol: How it Works and Roadblocks to Progress – Kevin & Kathleen Muldowney

Kevin Muldowney, PT has been treating patients with EDS for the past 15 years. He graduated from the University of Rhode Island in 2002. His clinic treats over 125 patients with EDS every week. He has treated patients from around the world both in person and virtually. He published a book “ Living Life to the Fullest with Ehlers-Danlos Syndrome” in 2014, which outlines his exercise protocol for people with EDS. 

Kathleen Muldowney attended St. Bonaventure University for a BS in Biology, then earned a Master’s in Physical Therapy from University of Rhode Island.  They opened Muldowney Physical Therapy with their husband, Kevin in 2009.  They now have 2 clinics that treat primarily patients with EDS and see approximately 125 people every week who have EDS.  

Drug Intolerance in Hypermobile EDS and Pharmacogenomics as a Tool for Personalized Drug Management – Dr. Adrijana Kekic

Dr. Adrijana Kekic is a Pharmacogenomics (PGx) Clinical Pharmacy Specialist, Assistant Program Director (APD) for Community-Based Pharmacy Residency, and APD for Outpatient Pharmacy Education at Mayo Clinic in Arizona (MCA). As a pharmacogenomics clinician, researcher, and educator she leads implementation of pharmacogenomics services across the Mayo Clinic. Her research work includes pharmacogenomics studies in anesthesia, transplant, oncology, palliative care, cardiology, and large-scale whole exome sequencing study for pre-emptive medication monitoring. She lectures extensively on pharmacogenomics with niche in psychopharmacology. As an international speaker and a PGx subject expert she frequents precision medicine podcasts, conferences, and other media platforms. 

A Quick Intro to Medical Cannabis for EDS & HSD Folk – Dr. Jordan Tishler

Dr. Tishler is a Cannabinoid Specialist. Through his training in Internal Medicine and years of practice as an Emergency Physician, Dr. Tishler brings his knowledge, reason, and caring to patients here at inhaleMD, and through his advocacy work at the local and national levels.

Dr. Tishler graduated from both Harvard College and Harvard Medical School, trained at the Brigham and Women’s Hospital, and is faculty at both the Brigham and Women’s Hospital and Harvard Medical School.  He has spent many years working with the underserved, particularly providing care for Veterans.  Having treated countless patients harmed by alcohol and drugs, his observation that he had never seen a cannabis overdose led Dr. Tishler to delve deeply into the science of cannabinoids’ safety and treatment. 

Dr. Tishler is a frequent speaker and author on a variety of topics related to the medical applications of cannabinoids. He is the President of the Association of Cannabinoid Specialists.

Mindfulness: Impact and Effectiveness for Hypermobility – Jeannie Di Bon

Jeannie Di Bon is a Movement Therapist based in London specializing in working with people with hypermobility, Ehlers-Danlos Syndrome (EDS) and chronic pain. Originally trained in Pilates, over the past decade her research and study have gone on to encompass biomechanics, anatomy, neuroscience and pain management.  She has clients all over the globe. She is the founder of The Zebra Club – a comprehensive solution of online movement therapy and community for people with EDS / HSD.

Jeannie has hypermobile Ehlers-Danlos Syndrome and rehabbed her body and mind from chronic pain.

Bruising, Bleeding, & Skin, and Pain Medication & Alternative Treatments Q&A Session

Breaking the Stigma Around Sex and Intimacy – Natasha Silverman

Natasha is an experienced therapist and counselor specializing in sex and relationships. She supports couples, individuals, singles and co-parents to enhance mental, relationship and sexual wellbeing.

Natasha implements her training in systemic, person-centered and narrative therapies, CBT and MBT. She specializes in working with barriers to emotional, physical and sexual intimacy. Natasha also trains frontline practitioners in supporting couples to develop and implement healthy communication and conflict strategies.

Natasha was diagnosed with EDS in 2012, and has developed a particular interest in empowering those with disabilities, chronic illness and pain disorders to reshape, maintain and enhance their relationships and connections.

Natasha enjoys speaking, writing and educating on topics related to sex and relationships and has worked with a number of publications such as Harper’s Bazaar. She has also authored articles in UK national newspapers.

Why Does Sex Hurt? Vulvar Pain and Pain During Sex in Females – Jennifer Glayzer

Jen Glayzer, BSN, RN is a registered nurse and a PhD student at the University of Illinois Chicago where she researches pain in vulvodynia and Ehlers-Danlos syndromes. Her work was the first to suggest up to 50% of females with EDS have vulvodynia. Her doctoral research characterizes vulvar pain, generalized pain, and comorbid conditions in females with vulvodynia and/or EDS to help guide the development of targeted treatments. Her research is supported by the National Institutes of Health National Institute of Nursing Research (NINR), Rockefeller University Heilbrunn Family Center for Research Nursing, the University of Illinois Chicago, and The Ehlers-Danlos Society.

She has attended the NINR Summer Genetic Institute, earned a Bachelors of Science in Nursing from Michigan State University, and a Bachelors of Science in Health Science from Grand Valley State University. Outside of her research she advocates for the rights and needs of persons with disabilities.

Pelvic Pain, Bleeding, and Incontinence in EDS & HSD – Dr. Sumana Koduri

Dr. Sumana Koduri is an Associate Professor at the Medical College of Wisconsin and is board certified in Obstetrics and Gynecology and Female Pelvic Medicine and Reconstructive Surgery. She received her Doctor of Medicine degree from Northwestern University Medical School. She completed her residency in Ob/Gyn at Aurora Sinai Medical Center in Milwaukee, WI, followed by a fellowship in Urogynecology back at Northwestern University from 1998 to 2001.  

Dr. Koduri’s practice involves the evaluation and treatment of pelvic floor disorders such as Incontinence, Pelvic Organ Prolapse, Overactive Bladder, Interstitial Cystitis and Pelvic Pain. She emphasizes non-surgical as well as surgical treatment and promotes minimally invasive surgeries. 

While pelvic floor disorders may not be life-threatening conditions, they can have a strong negative impact on one’s quality of life. Dr. Koduri’s approach to a woman has always been towards improving this quality of life in a multimodal fashion. 

Sex and Intimacy Q&A Session

Community Voices – Paul Ogden

a selfie of paul sat on a sofa, with a bookshelf behind him

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.

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