Hypermobility Happy Hour HypermobilityHH

On this episode, our guest is Jo Southall, Occupational Therapist and Patient Advocate. Jo is an Independent Occupational Therapist and an expert patient with many years of experience self-managing complex health conditions. Jo began working life in the sport and Outdoor Adventure industries. After being diagnosed with Hypermobile Ehlers Danlos Syndrome, Jo returned to study and gained a BSc degree in Occupational Therapy from the University of Northampton. Jo was named Changemaker Student of the Year for 2016 in connection with their work in helping to bring wheelchair basketball to the university, their volunteer work with the Hypermobility Syndromes Association in the UK (HMSA) and writing their blog about their own experiences and practice. Jo's final placement also made her the UK’s first Occupational Therapist to work in the travel and tourism industry. Jo is also a pioneer in remote placement work as well.

Jo completed her degree in September 2016 after 5 years, thousands of miles of travel, 57 nights in 4 different hospitals, 5 different A&Es (some more than once), 4 ambulance trips, countless hospital and GP appointments, 3 work placements, living in student accommodation, hotels and friends’ houses.

Jo has been self employed working via videochat since obtaining qualification and they continue to volunteer for the HMSA. Jo is also on the medical advisory board for the HMSA. Jo's regular Occupational Therapy work consists mainly of 1:1 appointments with clients and their loved ones. Jo is a regular guest lecturer and leads webinars and training sessions both in the UK and abroad. Recently, Jo started down the Practice Educator route and you can find out more about that in their Practice Educator Diary (link below).

Links:
https://jboccupationaltherapy.co.uk/

https://jboccupationaltherapy.co.uk/category/occupational-therapy/practice-educator-diary/

https://www.instagram.com/jboccytherapy/?hl=en

Jo Southall on The Rest Room Podcast: Pacing: A guide for people who’d rather be doing other things on Apple Podcasts, available at: https://podcasts.apple.com/gb/podcast/pacing-a-guide-for-people-whod-rather-be-doing-other-things/id1218852479?i=1000550501384
(This is the first episode in a series)

Jo Southall's Youtube channel available at: https://www.youtube.com/@JBOccyTherapy

Jo Southall on workplace adjustments: https://www.youtube.com/watch?v=3yjyuGfxTY8

Jo Southall on occupational therapy: https://www.youtube.com/watch?v=_NnWsZszG6g

Article on the "Siberian Ice Princess" Mummified Remains:
D.I. Abrams, M.D., Integrating Cannabis Into Clinical Care, Curr. Oncol. 2016, available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4791148/ (see introduction)

On this episode, British-Iranian journalist Punteha van Terheyden discusses the recent tragic death of Stephanie Aston in New Zealand and the article Punteha wrote about Steph and Punteha’s own experiences with hypermobility and other medical conditions.

Punteha van Terheyden - https://www.vtfeatures.co.uk/

'Stephanie Aston died after doctors said she was faking her symptoms. I'm not even surprised' - Story by Punteha van Terhayden - https://www.mamamia.com.au/stephanie-aston-death/

People magazine article about Stephanie Aston - https://people.com/ehlers-danlos-new-zealand-stephanie-aston-dies-7966639

Another recent article by Punteha: https://metro.co.uk/2023/10/04/it-costs-a-bomb-but-cannabis-oil-has-allowed-me-to-stand-up-again-19589151/

On this episode, our guest is Dr. Brit Harmon, a Doctor of Physical Therapy who specializes in hypermobility and women’s health. Dr. Brit works to help women to feel more empowered in their ability to create sustainable and obtainable shifts in their bodies and minds. Her background in Hypermobility, the female cycle, holistic health, and the pelvic floor has allowed her to connect the dots in helping women to more fully understand how to care for themselves.

Links:
https://www.bloomembody.com/
https://www.bloomembody.com/free-resources

On this episode, Donna Irene talks about her experience with hypermobile Ehlers-Danlos Syndrome and related conditions. Donna is a travel photographer with hEDS from Miami, FL and soon to be in Chattanooga, Tennessee. She picked up a camera at the age of 13 and since then her camera has taken her to 5 continents and 40 countries. Since her diagnosis in 2022 she has become an advocate for women with invisible disabilities and shares about her journey on social media.

Links:
Instagram: https://www.instagram.com/chronicandcapable
TikTok: chronicandcapable
Dr. Rodney Grahame quote: https://www.the-rheumatologist.org/article/function-despite-pain/4/?singlepage=1
Dermal fibroblast article: https://pubmed.ncbi.nlm.nih.gov/36552803/

Content advisory: This episode contains discussion of highly sensitive topics including suicide and allegations of child abuse. Please exercise listener discretion.

On this episode, Kerry interviews Donna Sullivan, a patient advocate with the organization TCAPP, The Coalition Against Pediatric Pain. She is a graduate of Providence College and has worked for more than two decades in media, communications and marketing with some of the world’s biggest brands. Donna uses her skills to help TCAPP raise awareness of the needs of children living with complex pain. She and her husband have three children diagnosed with Ehlers-Danlos Syndrome, POTS, and complex regional pain syndrome. Donna's goal is to give voice to the real struggles that families with complex pain face in trying to get appropriate care and treatment.

Links:
TCAPP Website https://tcapp.org/
TCAPP Summer Pain Camp https://tcapp.org/summer-pain-camp/
Fundraiser for Documentary: https://openeyepictures.com/complicated
https://www.pathwaystotrust.org/initiatives
https://www.thecut.com/2022/10/child-abuse-munchausen-syndrome-by-proxy.html
When the Helping Hand Hurts: How Medical Child Abuse Charges Are Undermining Parents’ Decision Making Rights over Children’s Medical Care by Maxine Eichner https://aaml.org/wp-content/uploads/MAT102-1.pdf

Mitch Martow returns to the Hypermobility Happy Hour to talk about his documentary and advocacy efforts.

Links
Bend or Break documentary
https://youtu.be/5toRNvFug3Y

Instagram (@mitchmartow)
https://instagram.com/mitchmartow?igshid=MTIyMzRjYmRlZg==

Bend or Break Instagram (@_bend_or_break_)
https://instagram.com/_bend_or_break_?igshid=MTIyMzRjYmRlZg==

https://www.cnn.com/videos/health/2022/12/16/ehlers-danlos-syndrome-patient-stories-contd-lon-orig.cnn