The Ehlers Danlos Society ~ Global Learning Conference, Dublin 2023

What was the GLC conference about?

The theme for the 2023 Ehlers Danlos Society’s Global Learning Conference was ‘Difficult Conversations in Ehlers-Danlos Syndrome (EDS) & Hypermobility Spectrum Disorders (HSD)’. As a hybrid event, it meant those not able to attend in person in Dublin, Ireland could still join the sessions and engage via the Whova platform to ask questions, connect with fellow attendees and even tune in to the gala dinner, fashion show & Zebra’s Got Talent performances on Friday night.

Across four days (2nd – 5th August), healthcare professionals joined other key voices including patients, guest speaker and advocates to discuss all things EDS and present across five key themes:

  1. Conversations between a patient and healthcare professionals
  2. Self advocacy
  3. Sex, Drugs, Walk or Roll
  4. Listen to Your Gut
  5. Let’s Get Physical….and Psychological

Within these overarching themes presentations and Q&A sessions discussed effective communication strategies including for medical appointments, approaches to manage symptom flares, the consideration of neurodivergence in the complex web of EDS/HSD and the wide range of gastrointestinal issues and the role of nutrition.

Additionally, for those younger attendees there were a selection of sessions for Junior Zebra Kids and Teens with experts. For the early risers attending the conference, the wonderful Jeannie di Bon of The Zebra Club ran three sessions encompassing Breathwork and Mindful Movement.

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Why were we at the EDS GLC 2023?

Conferences such as this help Helen and Mark of Spriggs Chiropractic keep up to date with developments in the EDS community and approaches to care, connect with new and existing colleagues to help us, help you.

However this conference we were kept extra busy as our very own Helen Spriggs was invited to speak on Day 3; Listen to Your Gut, presenting ‘Migraines Are Not Bad Headaches: Practical Nutrition & Lifestyle Considerations for Managing Flares & Associated Fatigue‘. This session helped to unpack the role of nutrition in the world of migraines and headaches against the backdrop of EDS/HSD. Helen spoke about how our nutrition may help or hinder migraines, plus tips, strategies and considerations for you, and those around you.

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Alongside Helen, were a number of nutrition and dietetic colleagues presenting on:

  • Lorna Ryan of Lorna Ryan Health covered ‘Integrating Holistic Nutrition Strategies to Manage Upper & Lower GI Symptom Flares’ and ‘Pitfalls of a Restrictive Diet’.
  • Laurie Bilyeu of Connection Health guided us through ‘Managing Your Diet in Social Settings’.
  • Bonnie Nasar of Nasar Nutrition spoke about her passion; ‘Mast Cell Disorders food minefield: Discussing the myriad of complicated dietary interventions and navigating your way to foods you may enjoy’.

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A wonderful new connection was the fabulous Becky Berry, a Registered Nurse at The Centre for Change in Utah who was ‘Weighing in on the Difference Between Eating Disorders & Disordered Eating’ looking at overlaps, potentials for misdiagnosis or missed opportunities to help.

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The full agenda is available here. If you weren’t able to join the conference in person or virtually, where you can purchase all the recordings that you will have lifetime access to. We understand these will be available later in August once the videos are edited and captioned.

 

Resources from Helen’s talk

Helen discussed the role of tracking migraines (and headaches) as part of your journey to understanding them and engaging with healthcare professionals. She discussed the different information to capture in a ‘migraine log / diary’ but also different ways to capture this information. The Migraine Trust have this helpful guide on keeping a symptom diary here to benefits. Typically the type of information we are looking to capture will include:

  • Day, date & time of migraine
  • Duration of symptoms
  • Severity of attack – may be descriptive / numeric scale (just be consistent in how you choose to capture)
  • Location of any head pain / discomfort if present)
  • Aura symptoms (if present)
  • Any other symptoms such as dizziness, hypersensitivity to light, smell, sound or others
  • Other potential triggers, e.g. the weather, menstrual cycle, skipped a meal, poor sleep, stress, change to medication
  • What you did to help e.g. medication, sleep, dark room, other.

 

Here are some direct links to some of the apps Helen highlighted – we do not have any affiliation with any of these apps/companies – and recommend finding the strategy that is right for you.

Migraine Buddy

Migraine Monitor

N1-Headache

Manage My Pain

Branch Health

Health Log or Headache Log

 

For some, using an app on a smart phone or tablet might trigger or worsen a migraine. Finding alternatives ways to capture this information is important. Therefore some alternatives for capturing the same information that might include:

  • On/in a regular paper calendar or diary
  • Dedicated headache/migraine paper diary/symptom log
  • Regular note book
  • Voice to text on a device to capture the information (or a dicta-phone)
  • Spreadsheet
  • Existing templates such as this simple one available to download for free from The National Migraine Centre.

 

Did you attend Helen’s talk & didn’t get a chance to ask a question?

Great news, you are welcome to send her your question. You can do this by emailing hello@spriggsnutrition.co.uk OR use the Email Us button at the top right corner of this website and pop your question in the message box.

Please remember, Helen can’t answer case specific questions, as it wouldn’t be appropriate without further case context.

 

When is the next EDS Global Learning Conference?

The events team at The EDS Society are always one step ahead and already have GLC 2024 booked. The conference theme is ‘From Head To Toe’.

When: 17th-21st July 2024

Where: Philadelphia, Pennsylvania, USA & online as it will run as a hybrid event.

Across the five day event there will be presentations and workshops covering all types of EDS & HSD. The last day (Sun 21st July) will be dedicated to discussing the genetically-defined types of Ehlers-Danlos syndromes.

More information & tickets can be found here – including access to $100 off a ticket for the full event.

If you have any questions you can contact the Events Team directly if you have any questions: events@ehlers-danlos.com

2024 Global Learning Conference - From Head to Toe. Philadelphia PA, USA. July 17-21, 2024

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