This issue:
Commitee Update
Newly Diagnosed Seminar
Clinical Advisory Panel
The Ehlers-Danlos Society update
Hubs
Patient stories
Rare Disorders New Zealand
Resources
Fundraising
Community news
Rewardhub – shop normally and earn donations for us!
Kia ora Koutou
As they say, new year; new you – Obviously this is near impossible with our unpredictable bodies, but maybe it means that we can try and understand ourselves better.
Our amazing volunteer team of 6 are slowly making our way back into work mode, and we thank you all for allowing us to take a break over summer. As I’m sure you can all appreciate, being run 100% volunteers means that we try and fit our EDSNZ work in around or private lives, so we might not always be available, or respond right away, but we are here to help support you all as best as we can.
Our clinical team are increasingly getting busier and busier as condition becomes more advertised in public.
Currently our team is made from, Physiotherapy, Osteopathy, Geneticist, Podiatrist, Chiropractic, Dietitian, woman’s health, Naturopath, and Psychologist – With special mention to Jacquelyn Shirmer and her EDS Wellness clinic in Mangawhai, and Anita Crawshaw and her Hypermobility Clinic in CHCH; we have big visions for our team this year! We have also been connecting with our Australian counterparts to form a great community in Australasia.
We have also been connecting with ANZMES team for ME/CFS Support for our community, and we now have this information connected on our website – Click here for information on Comorbidities (associated conditions)
We have our new “What is EDS?” brochure available on our website (Click here) for printing, or for order (email us).
We are also happy to send out a couple of these to anyone who wants to ‘pound the pavement’ and hand a few of these out in their local area – get in touch if this is something you’d like to help us do.
Our amazing website guru, Tara, is continuously updating our website with new information. Please check out our resource page to see if there is anything new to check out (click here).
Before we sign off this newsletter, we would like to share (click here) all the news articles that have been out in the last year (and earlier) in our NZ community. These stories help share messages and awareness from our communities perspective so we thank you for your advocacy efforts x
We would love to hear YOUR story with successes, diagnostic journey, or any other story that may be able to support others with increasing their knowledge on what is possible with EDS/HSD. When other people see a story that mirrors their own journey, it helps to build a bigger sense of ‘I’m not alone’, which is fantastic for one’s mental health.
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• Talk to your own GP and ask what options there are to trial or look into
• Lifeline: Call 0800 543 354 or text 4357 (HELP) (available 24/7)
• Suicide Crisis Helpline: Call 0508 828 865 (0508 TAUTOKO) (available 24/7)
• Youth services: (06) 3555 906
• Youthline: Call 0800 376 633 or text 234
• What’s Up: Call 0800 942 8787 (11am to 11pm) or webchat (11am to 10.30pm)
• Depression helpline: Call 0800 111 757 or text 4202 (available 24/7)
• Helpline: Need to talk? Call or text 1737
If it is an emergency and you feel like you or someone else is at risk, call 111
Petition for change to Somatic Disorders
Newly Diagnosed Seminar
We have our next Newly Diagnosed Seminar on February 9th, Friday at 12pm
Jacquelyn Schirmer (CAP – Lead, osteopath, clinic owner) and myself, host this session, and are only able to answer general questions with other professionals that join.
We will confirm closer to the date if other professionals will be in attendance for the General Question section at the end.
Please join here : LINK
You are still welcome to ask questions using this function here. If you are unable to attend sessions for other circumstances, you are also more than welcome to fill out the form above. Note that if you are unable to attend a session, we can hope to address these concerns in subsequent newsletters.
We do have our slides available for viewing here.
Clinical Advisory Panel
Some exciting new to share for those north of Auckland – Jacquelyn Schirmer shared news of her new EDS clinic in Mangawhai – details of this can be found here.
Anita and EDSNZ have planned to do a teaching segment with Plunket NZ to potentially identify early signs and how to help support families.
We will continue to discuss ways on how to improve knowledge for medical professionals through the diagnosis process, along with continuing our efforts in the next couple of months towards a members booklet.
We are also strengthening our Australian connection, as clinicians in Australia set to create their own official body.
Thank you to our amazing help from our Clinical Advisory Panel; 14 amazing clinicians from across New Zealand, covering multiple disciplines who are donating their time to us.
We now have an email address that your medical professional can email if they need guidance on next steps forward. Please share this email address if you’re under the care of someone who you feel needs guidance.
The Ehlers-Danlos Society update
March 16, 2024 — EDS ECHO Summit Series: Emergency Care Event
Join us virtually for a power-packed, one-day event focused on addressing the unique challenges of emergency care for individuals with EDS or HSD. Our expert-led discussions will delve into critical topics including:
- Dislocations, Acute Injuries, and Pain
- Vascular Complications in EDS
- Medical Alert and ID Systems
- The Role of Paramedics/First Responders
- Understanding Emergency Room Capabilities
Emergency Care in the USA: Insurance, Payments, and Healthcare Systems
Navigating the NHS in the UK
Community Voices: Pain Management and Alternative Therapies for Symptom Flares
July 17–21, 2024 — Global Learning Conference: From Head to Toe
Get ready for an enlightening hybrid experience! Our 2024 Global Learning Conference will take place in Philadelphia, Pennsylvania, USA, blending virtual accessibility with an in-person presence. With the theme “EDS and HSD: From Head to Toe,” this conference will offer a comprehensive exploration of symptom management and comorbidities.
Fatigue in EDS and HSD
Fatigue is a common and often underestimated symptom of EDS and HSD, which can significantly affect a person’s quality of life. There are many causes of fatigue in EDS and HSD, including:
Any one of these factors alone can cause fatigue. Often, more than one is present and each of these tends to aggravate the others. For example, chronic pain can make it difficult to exercise, which can lead to deconditioning. Deconditioning can worsen depression when people cannot do the activities that they used to be able to do.
Learn more about management of fatigue here, and find the 2023 EDS ECHO Summit: Fatigue, Causes and Management recordings to watch here.
- Chronic pain
- Deconditioning
- Dysautonomia
- Bladder and bowel dysfunction
- Mental health
- Nutritional deficiencies
- Medications
Better Together Consumer and Scientific Conference
The Australian POTS Foundation is pleased to present our 2024 conference. ‘Better Together’.
This conference will explore the latest research and practical ways of living with invisible conditions such as Postural Orthostatic Tachycardia Syndrome, Ehlers Danlos Syndrome and Long COVID.
To secure your in person or virtual attendance ticket go to – https://events.humanitix.com/
You’ll find a recent webinar with Dr Burling here – https://potsfoundation.org.au/
Hubs
Our BOP hub is looking at doing a virtual catch up at some stage before Christmas.. Keep an eye on the BOP hub FB page and Loosely speaking for updates
It’s been great catching up with some of our community, and meeting others for the first time. It’s invaluable to share experiences, learn from each other and find common interests.
Our meetings in 2023 have been in Whangārei, Kaiwaka and Mangawhai. If you have any suggestions for a meeting venue we’d love to hear from you.
All meetings are posted on the Northland Hub page.
We’ve created another hub, due to enquirers, to help support vascular compression and vEDS (Including those with associated vascular) to connect
Join here.
Youth hub for 16-25 yearolds EDSNZ GOATS on Discord
If there is anything else you would like to see some focus on, please don’t hesitate to contact us. We are always welcoming new ideas and thoughts to ensure our community is best looked after and supported.
Patient stories
We’re on the look out for some people to contribute their health stories (journey to diagnosis and what has happened since) for our EDS NZ website. These stories will hopefully help other people in their own journeys to know they aren’t alone and that there are ways to get support in New Zealand.
Read our latest story from a carers point of view here
If you would like to have your story on our Ehlers-Danlos Syndromes New Zealand website, please contact us through contact@ehlers-danlos.org.nz
Rare Disorders New Zealand
Newtown Festival: 3 March 2024
Rare Disorders NZ will have a stand at the Newtown Festival, the biggest street party in New Zealand with over 80,000 people attending. We would love to have support groups on our stand to help raise awareness of rare. The festival is on Sunday 3 March 2024.
If you have anyone Wellington-based who would like to represent your support group and the rare community on the Rare Disorders NZ stand for a couple of hours please email and we will work out a timeslot for your group.
Rare Beer Challenge 2024 at Fortune Favours, Wellington and Auckland: 8 March 
The Rare Beer Challenge will be back in 2024 with over 20 breweries competing for the title of Rare Beer Champion. Breweries are tasked with producing their best version of a rare beer using rare ingredients or unusual brewing techniques. It is a fun evening and a wonderful fundraising opportunity for Rare Disorders NZ, last year raising over $17,000!!
A selection of the entries will be available at 16 Tun in Auckland on the night.
When: Friday 8th March from 3pm
Where: Fortune Favours, Leeds St, Wellington; 16 Tun, Auckland, 10/26 Jellicoe Street
Parliament launch – Voice of Rare Disorder White paper: 28 February 2024
We are very excited to announce that our guest speaker will be Clinical geneticist and Rare Medical Director of the Rare Care Centre in Perth, Dr Gareth Baynam.
Resources
A free printable pamphlet explaining what EDS and HSD is.
Fundraising
Fundraising and Merchandise
We are always looking for unique ways to fundraise for our community. With that in mind, we have Zebra related merchandise for purchase, with proceeds enabling EDSNZ to continue on their mission in New Zealand.
Next year we will also be selling these in our shop:
Gift pack – Mug, lapel badge and pen, all with EDSNZ logo
$30.00 + Postage
Ziwi Keyring – Natural beech wood key ring with a shiny chrome split ring.
$7.00 + Postage
Ziwi Plush Toy – Soft zebra plush toy with embroidered eyes and a polyester tshirt
$25.00 + Postage
We will also be selling themed tshirt in Feb/March so please stay tuned!
Community News
Te Kete Haerenga – Your journey to wellbeing kete
Designed for and with people living with long-term health conditions (LTCs), this self-care and care planning toolkit can be used to describe what is important to the person and their whānau, what they wish to achieve in their lives and how others can best support them in that journey.
Fresh look medicines factsheet
Te Tāhū Hauora Health Quality & Safety Commission has released a Safer Prescribing Consumer Research Report identifying consumers’ need for “…direction to credible websites and trustworthy sources” and written information that is brief and jargon free.
It’s timely that we’ve just released our first medicine factsheet in our fresh new Healthify look. This plain language factsheet explains what patients need to know about taking Opioid medicines for short-term pain. Email us at hello@healthify.nz to let us know what you think.
Plain and simple patient portals
The Health Quality & Safety Commission launches co design e-learning course.
Health Quality & Safety Commission (the Commission) has released a new e-learning course, ‘Co-design in health: an introduction’. Co-design is a tool that brings together consumers, whānau and communities, to ensure that multiple perspectives are reflected in the design, delivery and evaluation of services.
Co-design in health: an introduction.. is a free resource available to all health care professionals through Manatū Hauora | Ministry of Health’s Learn Online platform. The course is open to anyone (first-time Learn Online users will need to create a login). Learners will be able to work through the course at their own pace.
To access the module, please click here
Shiloh, a non-profit based in Auckland has launched.
Shiloh is launching a free integrated support service for people living with chronic illness in the Auckland region. . If you are interested in this new service email help@shiloh.org.nz or visit the website www.shiloh.org.nz
Courage Club podcast for parents of disabled, neurodivergent and medically fragile tamariki
It’s hard to talk about, and that’s exactly why we need to. In Aotearoa, disabled children are most at risk of sexual harm – and that fact hurts. Talking about it and normalising brave conversations – one kōrero at a time – is a protective factor in itself. But it can be hard to know where to start.
This podcast navigates the tough stuff, with all the feels – tears and laughter and through sharing candid experiences. The Courage Club is intended to empower other parents to begin these brave chats, teaching our children about their body and their needs, navigating carers and visitors in and out of the home, and building the foundations for their positive sexual wellbeing and identity which all contributes to keeping our Deaf, disabled and neurodivergent children safe when it comes to preventing child sexual abuse.
We hope that The Courage Club will be the first step towards brave, bold, powerful conversations that make our homes and communities safer for our precious tamariki.
The Courage Club podcast and supporting resources are available now at courageclub.co.nz and on podcast platforms Spotify, Youtube
Reward Hub
Such a great way to donate to EDS NZ while shopping for groceries, clothes, supplements, gifts and so so many more things
How it works
Rewardhub can earn free donations for EDSNZ just by doing every day online shopping from our Rewardhub page, and it won’t cost you an extra cent. A free and easy way to help good causes, in a world of online shopping!
Jump on and shop today – https://rewardhub.co.nz/
If you have any questions, please contact us on contact@ehlers-danlos.org.
Noho ora mai,
EDSNZ