On this episode, Kerry interviews Lilian Holm (Doctor of Physical Therapy) about her practice which focuses on the treatment of patients with hypermobility conditions including Ehlers-Danlos Syndrome using physical therapy. Dr. Holm utilizes a comprehensive, unique model of care which includes extended private treatment sessions and shares her perspective on a variety of aspects of treating patients with EDS and related conditions including chronic pain and other orthopedic conditions.

On this episode, we have returning guest Dr. Abby McElroy who previously was a guest on the Hypermobility Happy Hour discussing EDS in animals. Today, she returns with her principal investigator Dr. Heather Gray-Edwards to discuss the exciting new research they have been working on.

Dr. Gray-Edwards is an assistant professor of Radiology at the University of Massachusetts’ Chan Medical School and is a member of the Horae Gene Therapy Center. Much of her research has been focused on evaluating therapeutic interventions in testing novel Adeno-associated viral vectors and delivery routes using both biochemical and molecular biology techniques, as well as in vitro evaluation like neurological examinations, MRIs, and electrodiagnostics of GM1 and GM2 gangliosidosis cats.

Dr. McElroy is a doctoral student who previously received her Doctor of Veterinary Medicine degree from Tufts University in 2017. She further obtained a master’s degree from Michigan State University in 2018 which focused on the characterization of neurological abnormalities in an equine model of Ehlers-Danlos syndrome. From 2018 to 2021, Dr. McElroy was a Postdoctoral Research Associate in the Department of Neurosurgery at Rhode Island Hospital and the Medical School of Brown University where she studied tethered cord syndrome and myodural bridge dysfunction in patients with Ehlers-Danlos Syndrome. In her current position at the Gray-Edwards laboratory at the University of Massachusetts’ Chan Medical School focuses on the development of gene therapy for Ehlers-Danlos syndromes and multisystemic smooth muscle dysfunction syndrome (related to the ACTA2 mutation). Abby also has two cats and two dogs and one of her cats has Ehlers-Danlos syndrome and is a bit of a social media star in his own right (his name is Reed and you can follow him at reed_eds)

On this episode, Dr. Megan Barker of Rhythm Health, LLC discusses her practice treating patients with EDS and HSD using physical therapy and health coaching. Dr. Barker has a Doctor of Physical Therapy degree from The George Washington University where she is a current member of the adjunct faculty at the university’s Doctor of Physical Therapy Program. Dr. Barker is a Board Certified Specialist in Orthopedic Physical Therapy. She is also a Certified Women’s Health Coach through the Integrative Women’s Health Institute. Dr. Barker also has Pilates Training.

Dr. Barker is particularly passionate about treating women with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder (HSD). Throughout her practice, Dr. Barker has worked with many women who had previously been misunderstood or misdiagnosed and as a result suffered from poorly-managed care.

On this episode, Kerry interviews Ryann Mason. Ryann is a nurse, advocate, sex educator, athlete, activist, and Ehlers-Danlos syndrome patient known on instagram as chronically_ry who is involved in a number of projects, many of which involve spreading awareness about the need for increased visibility for disabled persons and better accessibility in the media and in society at large. Ryann was crowned Miss Wheelchair Virginia 2020 and 2021–a role that has allowed her to promote disability education and awareness. She was also recently interviewed by Forbes magazine in an article that discussed her work with Miss America, Camille Schrier.

A Rare Disorder Linked Miss America and Miss Wheelchair Virginia: Now They’re Banding Together to Help the Disability Community (Forbes Magazine) December 1, 2020 https://www.forbes.com/sites/allisonnorlian/2020/12/01/a-rare-disorder-linked-miss-america-and-miss-wheelchair-virginia-now-theyre-banding-together-to-help-the-disability-community/?sh=309a68475e48

Ryann Mason (chronically_ry)

https://www.instagram.com/chronically_ry/

On this episode of Hypermobility Happy Hour we have two very special guests--Dr. Russell Norris, head of the Norris Lab at the Medical University of South Carolina and Cortney Gensemer, a graduate student and PhD candidate in the Norris Lab. The Norris lab has made some very exciting discoveries relating to connective tissue disorders and hypermobility specifically and so we’re very excited to get an update about what they’re doing and what the future might hold in terms of diagnosis and even treatments for hypermobility conditions.

The Norris lab is a multidisciplinary laboratory with students and PhD graduates who use various molecular, biochemical and biomechanical tools to understand connective tissue conditions. Dr. Norris and his laboratory have spent over two decades working to understand the genetics of cardiovascular diseases including cardiomyopathies, mitral valve prolapse, aortic stenosis, and other aortic valve diseases. Recently, the Norris lab made a discovery of a very strong candidate gene for hypermobile Ehlers-Danlos Syndrome.

Norris Lab | College of Medicine | MUSC https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab

MUSC researchers announce gene mutation discovery associated with EDS | MUSC | Charleston, SC https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos

On this episode of Hypermobility Happy Hour we have two very special guests--Dr. Russell Norris, head of the Norris Lab at the Medical University of South Carolina and Cortney Gensemer, a graduate student and PhD candidate in the Norris Lab. The Norris lab has made some very exciting discoveries relating to connective tissue disorders and hypermobility specifically and so we’re very excited to get an update about what they’re doing and what the future might hold in terms of diagnosis and even treatments for hypermobility conditions.

The Norris lab is a multidisciplinary laboratory with students and PhD graduates who use various molecular, biochemical and biomechanical tools to understand connective tissue conditions. Dr. Norris and his laboratory have spent over two decades working to understand the genetics of cardiovascular diseases including cardiomyopathies, mitral valve prolapse, aortic stenosis, and other aortic valve diseases. Recently, the Norris lab made a discovery of a very strong candidate gene for hypermobile Ehlers-Danlos Syndrome.

Norris Lab | College of Medicine | MUSC https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab

MUSC researchers announce gene mutation discovery associated with EDS | MUSC | Charleston, SC https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos

On this episode of the Hypermobility Happy Hour, Kerry interviews Dr. Richard Barnum. Dr. Barnum is a board certified child and adolescent psychiatrist who directed the Boston Juvenile Court Clinic for more than twenty years. In that role, he conducted psychiatric evaluations of thousands of children and families in the Massachusetts courts and also provided consulting services to the Massachusetts Departments of Mental Health and Youth Services, regarding cases involving complex legal and clinical problems. He has also consulted with the United States Department of Justice Civil Rights Division regarding psychiatric care provided to incarcerated juveniles in other states. He was also formerly an Assisted Clinical Professor of Psychiatry at Harvard Medical School and was affiliated with the University of Massachusetts Medical School. Dr. Barnum also contributed a chapter to the book Disjointed.

Dr. Barnum discusses the appropriate treatment of patients with hEDS, the issues in getting proper diagnoses, and what to do when you’ve been misdiagnosed with a psychiatric condition and/or undertreated for their physical ailments and conditions.

Barnum, Richard, “Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms.” Adolescent, health, medicine and therapeutics vol. 5 67-71. 17 Apr. 2014, doi: 10.2147/AHMT.S57486. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000178/

Dr. Richard Barnum, Psychiatrist, discusses EDS & Psychiatric illness misdiagnoses, EDS Awareness Educational Series, 17 September 2014, https://chronicpainpartners.com/webinar/free-webinar-19/

Article on misdiagnosis mentioned by Dr. Barnum:

https://www.verywellhealth.com/how-to-correct-medical-record-errors-2615506

Camille Schrier was diagnosed with classical Ehlers-Danlos as a child and went on to win the title of Miss America. She graduated with honors from Virginia Tech in 2018 with dual Bachelor of Science degrees in Biochemistry and Systems Biology. Camille is currently pursuing a Doctor of Pharmacy degree at Virginia Commonwealth University. In 2019 Camille earned the title Miss Virginia after performing a science experiment (the catalytic decomposition of hydrogen peroxide) as her onstage talent. In December 2019, Camille was named Miss America 2020, again after showcasing her science skills.

Camille has also been featured on national and international media outlets including The Today Show, CNN, BBC, The Kelly Clarkson Show, CBS This Morning, Inside Edition, The Weather Channel, Southern Living, Canada’s CTV, Germany’s RTL, and many more. She also partnered with PBS to produce a web series called Cooking up Science with Miss America.

Camille Schrier website: https://www.camilleschrier.com/

YouTube clip of Miss Virginia science experiment: https://www.youtube.com/watch?v=fsYUYja7O4A

Instagram: @CamilleSchrier

Questions? Comments? Suggestions for future episodes? Email [email protected]

On today's episode, Nia Clark and Kerry interview Dr. Abby McElroy, Doctor of Veterinary Medicine about EDS in many different animals. Dr. McElroy has an EDS-like syndrome herself and her work focuses on the research and treatment of animals with EDS. Dr. McElroy received her bachelor’s degree in neuroscience from Smith College, her DVM from the Cummings School of Veterinary Medicine at Tufts University, and her Master of Science degree from Michigan State University College of Veterinary Medicine.

Dr. McElroy currently works as a postdoctoral research associate in the Department of Neurosurgery at Rhode Island Hospital, where her research focuses on occult tethered cord any myodural bridge dysfunction in EDS. She also works part time as a small animal veterinarian, and consults worldwide on veterinary EDS cases.

The information discussed on this podcast episode relates to the treatment of animals and is educational only and not intended to be used in the treatment of any specific animal. This episode also includes off label discussion of treatments used in veterinary practice.

https://metro.co.uk/2020/01/15/cat-ehlers-danlos-syndrome-finds-loving-home-researcher-condition-12029489/

https://www.instagram.com/reed_eds/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6565730/

On this episode, Kerry talks to Esther Gokhale, founder of the Gokhale Method or “Primal Posture,” a postural awareness technique which has a large following and was first popularized at the beginning of the 2010s with professionals in Silicon Valley, California. Esther is known as the “posture guru of Silicon Valley” and her method has been taught internationally. She published a book called 8 Steps to a Pain-Free Back: Natural Posture Solutions for Pain in the Back, Neck, Shoulder, Hip, Knee, and Foot and she also created a DVD that explains her posture method. The Gokhale Method has been reported upon in the New York Times, by NPR, and many, many other publications. Esther also has a fantastic TED talk as well.

Follow the Gokhale Method on Facebook, Twitter on Instagram: @GokhaleMethod

Links:

https://www.youtube.com/watch?v=k1luKAS_Xcg (TedX talk)

https://www.amazon.com/Steps-Pain-Free-Back-Solutions-Shoulder/dp/0979303605/ref=sr_1_1?dchild=1&keywords=gokhale&qid=1591209952&sr=8-1 (Amazon listing for Esther's book)

https://www.amazon.com/Back-Pain-Primal-Posture-Solution/dp/B0072M7TMQ/ref=sr_1_1?dchild=1&keywords=gokhale+dvd&qid=1591209987&sr=8-1 (Amazon listing for Esther's DVD)

https://gokhalemethod.com/