Finding Your Range Podcast : Hypermobility and Chronic Pain Uncovered with Jeannie Di Bon

Talking with Lara Bloom | Finding Your Range Podcast S2:E1

Welcome back to Finding Your Range.  We are kicking off Season 2 with an open and honest chat with Lara Bloom.  Lara shares her experiences of living with EDS, the challenges she has faced and shares insights into her work at The Ehlers-Danlos Society.

 

Lara Bloom is the President and CEO of The Ehlers-Danlos Society and responsible for globally raising awareness of rare, chronic, and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD), and related conditions. 

 

Lara manages coordinated medical collaboration, raising funds for research, and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading Patient Expert. Commemorating ten years in the field of patient advocacy,  Lara was officially appointed a Professor of Practice in Patient Engagement and Global Collaboration at Penn State College of Medicine, USA, on March 11, 2020.

Season Finale | Finding Your Range Podcast Episode 16

Huge thank you to all the guests who joined me on Season one of Finding Your Range. It’s been a pleasure to share your stories and expertise. We wanted to listen to the hoof beats and I think we definitely did that. Please take a quick listen to my season analysis.

The Truth About Exercise and EDS | Finding Your Range Podcast Episode 15

Meet 3 people with EDS and hear our discussions on exercising when you have EDS and hypermobility. What works, what hasn’t worked, how important is exercise when you have hypermobility? These are just some of the questions we discuss in this episode.

We are often told we need to exercise when we have hypermobility but many people have had poor experiences for a variety of reasons.

Dr Jessica Eccles Talks Fatigue, Anxiety and Trauma | Finding Your Range Podcast Episode 14

I was so excited to interview our next guest. I think the podcast could have gone on 6 hours – it was so fascinating for the hypermobile community.

This week I am joined by Dr Jessica Eccles.

Jessica Eccles is a clinical academic psychiatrist at Brighton and Sussex Medical School. Her main areas of expertise are brain-body interactions, joint hypermobility and liaison psychiatry.

Dr Eccles completed her PhD in the relationship between joint hypermobility, autonomic dysfunction, and psychiatric symptoms and is now a Clinical Senior Lecturer.

She is particularly interested in dysautonomia, pain, fatigue, headaches, brain fog, sensitivities to sounds, smell, light.

This podcast covers a variety of her areas of interest.

The content of this interview is not designed to replace any medical advice or guidance. Please contact your medical provider if you have any concerns about your health.

Athletes with EDS | Finding Your Range Podcast Episode 13

Please meet two exceptional people who are using their passion for climbing to manage their EDS pain and symptoms – both physical and emotional. Welcome Yasmin and Anoushe.

Yasmin is 26 years old and is from London. She is currently a Trainee Educational and Child Psychologist, which involves completing a 3 year doctorate. Yasmin was diagnosed with hEDS last year after she experienced rapid deterioration of her health, most likely due to the Coronavirus Lockdown. In her spare time during the last 6 years, Yasmin has become an avid rock climber, and she really feels like this ‘held her together’- literally in terms of her joints/EDS and also mentally. Yasmin began to notice that, as a plus-size paraclimber, she was somewhat of an anomaly at climbing centres and in outdoor spaces. She is therefore particularly passionate about promoting diversity and inclusion in the climbing and outdoor industries, and does this in her roles on the teams of All In Beta and United We Climb, two organisations dedicated to the aforementioned cause.

Anoushé is 33, British and Luxembourgish and currently living and working in London as a civil servant after having grown up in Luxembourg and studied in different countries. Anoushé was diagnosed with hEDS 4 years ago after experiencing different symptoms throughout her life. She was also born missing her right arm below the elbow and is a cancer survivor. Anoushé was a competitive swimmer and martial artist until the age of 15 when her joints became too loose. She was advised to stop and that led to a 10 year deconditioning with 9 surgeries and culminating with cancer. Anoushé started climbing to recondition her body after cancer treatment but only took it up as a regular hobby 5 years ago and has been competing nationally since then. Climbing for Anoushé isn’t just a mental escape from her hectic and over-medicalised life but the movement patterns help put her joints back in place and strengthened her so she has a much better quality of life. She also met her husband while competing. Being visibly disabled and having invisible health conditions as well as having Pakistani heritage and wearing a headscarf, Anoushé has experienced plenty of barriers in life, be they self-limiting beliefs, the perception of others or how society is designed in an inequitable way. Anoushé is passionate about reducing all those barriers, in particular for access to sport and calling out things as they are. She’s an Ambassador for LimbPower, EDS UK, Patron for Grit & Rock, co-founder of Paraclimbing London and also a team member of United We Climb. Anoushé is currently recovering from major abdominal surgery and is struggling to walk after a very difficult and medically complicated 2020.

The information provided in this video is not designed to replace medical advice or be used as a replacement. Please ask your medical practitioner if you have particular queries on your health.

Real Life Stories: Cognitive Behavioural Therapy Explored | Finding Your Range Podcast Episode 12

Please welcome our guest Natalie Eyre, a Cognitive Behavioural Therapist from the UK.

Natalie had various symptoms of EDS/HMS since the age of 2 but it took until 2011 to get her diagnosis (22 years old).

She has struggled a lot with various symptoms throughout her life, but through a combination of Pilates, appropriate physio and psychological support, Natalie feels like she is living the best life even with how much pain and fatigue on a daily basis.

Her company name is Natalie Louise Therapy as a Cognitive Behavioural Therapist (also trained in Acceptance and Commitment Therapy) specialising in seeing people with chronic pain and illness. She provides remote therapy so this is either over the telephone or via Zoom - this can be particularly beneficial to clients with chronic pain or illness because there is no travelling and no sitting on uncomfortable seats!

She is an accredited member of the British Association for Behavioural and Cognitive Psychotherapies (BABCP), a member of the Association for Contextual Behavioural Sciences (ACBS) and both a personal and professional member of the HMSA.

You can learn more about Natalie’s work at https://www.natalielouisetherapy.co.uk/

This podcast is not intended to replace any medical or psychological advice. Please speak to your medical professional if you have any concerns about your health.

Real Life Stories: A Teenager Navigating Her Life With HSD | Finding Your Range Podcast Episode 11

If you think that HSD is a lesser diagnosis or causes less issues than hEDS, please listen to this latest interview with Rachel, a 17 year old who is beginning to navigate life with her new HSD condition.

Rachel is a senior in high school with interests in piano, language learning, ballet, and pretty much anything related to the study of the body and movement in general.

Growing up, she was very physically active, and both a serious ballet and piano student. She first noticed symptoms of chronic pain and fatigue around 11 years old, starting in mostly upper extremities and gradually becoming widespread. By the age of 14, she had stopped all physical activity and started having difficulty accomplishing daily necessities, including school work and simple things like brushing teeth or combing hair. Early last year, after many visits to different doctors she was diagnosed with Hypermobility Spectrum Disorder.

Rachel states that Movement therapy has given her her life back. She is in the process of slowly rehabbing her body. But, the combination of this experience and Jeannie's in depth understanding of the hypermobile body has already been life changing.

Because of these experiences, Rachel has become fascinated about learning about the inner workings of the body. She is passionate about learning more how retraining habitual movement patterns can work wonders toward getting rid of chronic pain.

The content of this podcast is not intended to replace medical guidance. Please speak to your medical practitioner if you have any concerns.

Real Life Stories: Tools to Manage Chronic Pain | Finding Your Range Podcast Episode 10

Welcome to this episode of Finding Your Range. Today we are joined by a guest expert patient who has hypermobility spectrum disorder.

Bethany is 37 and married with 3 children. She works full time as an RN transplant coordinator, caring for patients who have had a kidney transplant. Her symptoms started 13 years before her diagnosis after her first child and became progressively worse with each pregnancy. Bethany got her official diagnosis last year.

Bethany will share her personal hypermobility journey and useful tools to help manage the condition.

The content of this podcast is not intended to replace medical guidance. Please speak to your medical practitioner if you have any concerns.

Real Life Stories: Hypermobility Management Systems | Finding Your Range Podcast Episode 9

On this episode of Finding Your Range, we have another Real Life Story. These stories are crucial to this podcast – it is time we heard from directly from people living with chronic illness. I’m delighted to welcome Laura to the podcast who shares her personal journey living with a connective tissue disorder.

Laura is a mother living in Canada with her partner and two children. She was first suspected to have a of connective tissue disorder in 2016, however she and her son are still waiting for a genetics consultation to confirm HSD or hEDS. She also has a primary immune deficiency and an episodic movement disorder that affects her speech.

Laura is an Occupational Therapist working part time with children. The support of her therapy team and tools like the online membership site, The Zebra Club have been instrumental in supporting Laura to reach her goals, especially in her role as a parent.

The information in this podcast is not designed to replace medical advice. Please speak to your medical professional if you have any concerns about your health.

A Dietician with EDS Shares Her Story | Finding Your Range Podcast Episode 8

This is such a popular topic – nutrition, EDS and hypermobility. I am delighted to be joined by Bonnie Nasar who is an EDS & POTS warrior. She is also a registered dietitian with a virtual private practice specializing in chronic pain conditions. She has researched evidence-based dietary practices to help people feel better without giving up the foods they enjoy. She is the author of The 30-Minute Fibromyalgia Cookbook, which is full of quick and easy nutritious recipes. She lives in New Jersey with her husband and 4 kids.

You can find out more about Bonnie at her website www.nasarnutrition.com.

Please consult your medical practitioner if you have any concerns about your health and diet.