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
This time of year can be particularly tough on our Bendy Bodies. Not only is there an assault from increasing temperatures and humidity, but it’s party season.
How do you manage this time of year?
- I find it’s best to be practical and recognise my limitations. Which admittedly can vary by the day. Best to acknowledge this even when having a reasonably “high” energy day.
- Plan and prioritise. What is important to you? (Someone once advised doing half the things on your list.)
- Buy gifts online, if you can.
- Book medical appointments and treatments ahead, if possible.
- Do you have enough medications to cover the holiday period?
- Separate tasks into parts to be done over a few days.
- Utilise your freezer. Prepare meals, or elements ahead of time.
- Arrange to catch up with friends after the “party season.” Most of us are less rushed then.
- Listen to your body. What do you need? Say, “No” if necessary. Leave social gatherings early if you have to.
- I plan an “escape route” with my partner.
– Wendy
Previously noted –
In the increasing heat we do tend to find a bigger increase in our dysautonomia like symptoms, In the EDS international section, there is a great ‘Tips and Tricks for Managing Autonomic Concerns’ created for community
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.
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
We had our last meeting mid month with many in attendance.
Jacquelyn Schirmer shared news of her new EDS clinic in Mangawhai – details of this can be found here.
Anita has kindly offered to speak to Plunket about the potential for monitoring symptoms from an early age (Kelly to organise contact through RDNZ)
We are trying to get access to health pathways and getting more information into there for EDS.
We discussed about having the international courses available in NZ for CPD credits, which would be seen as a bonus for medical professionals to do, and inturn increase knowledge of EDS in NZ.
We will continue to discuss ways on how to improve knowledge for medical professionals through the diagnosis process, along with continuing our efforts towards a members booklet.
Thank you to our amazing help from our Clinical Advisory Panel; 13 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.
cap@ehlers-danlos.org.nz
The Ehlers-Danlos Society update
Tips and Tricks for Managing Autonomic Concerns
Emily Rich, MOT, OTR/L, is an occupational therapist in Tucson, Arizona, USA, where she has the privilege of serving adolescents and adults with chronic conditions.
Emily specializes in treating individuals with Ehlers-Danlos syndromes and forms of dysautonomia.
As an OT, Emily views daily life activities as opportunities for rehabilitation and supports clients in increasing participation and quality of life. In this video, she offers tips for managing autonomic concerns including:
- Salt and fluids
- Compression garments
- Vagus nerve stimulation
- Temperature regulation
- Biofeedback
- Bed angle
- Movement
- Sensory regulation
Head and Neck Issues in EDS & HSD
Over 80% of the patients that Dr. David Saperstein sees at the Center for Complex Neurology who have a type of EDS or HSD suffer from headaches, neck pain, or temporomandibular joint issues (TMJ/TMD).
In this video from our 2022 Global Learning Conference, now on YouTube, Dr. Saperstein talks about some head and neck concerns including:
- Headaches
- Migraines
- Medication Treatment Options
- Non-Medication Treatment Options
- Chiari Malformation
- CSF Leaks
- Intracranial Hypertension
- Diagnosing Concerns
New Research: Self-Reported Throat Symptoms in EDS & HSD
Ear, nose, and throat (ENT) specialists at a laryngology clinic in the United Kingdom have found an increase in referrals for patients with EDS experiencing symptoms of:
- Dysphagia (swallowing difficulties);
- Dysphonia (hoarseness); and
- Laryngopharyngeal reflux (LPR).
They began a cross-sectional observational study looking at the severity of throat symptoms and how often they were happening, hoping to gather insights to improve the assessment of these issues and treatment for those struggling.
As the largest study of its kind in terms of exploring throat symptoms of EDS and HSD and self-management strategies, this work provides a unique and valuable contribution and has generated interest from leading healthcare practitioners. Prior to this study, throat symptoms of EDS and HSD had not been well-reported.
The paper has been published this week and is open access. Read Here
A newly published study evaluated the effect of custom-made orthotics on pain, health-related quality of life (HRQoL), function, and fatigue in children and adolescents aged 5–18 with generalized joint hypermobility (GJH) and lower limb pain.
In this study, children with GJH reported reduced lower limb pain, improved HRQoL, functional endurance, and fatigue a month after fitting custom-made orthotics and maintained over a three-month period.
Dr Fraser Burling, POTS Unmasked 2022
Dr Fraser Burling (BHB, MBChB, Dip MSM, FRACP) is a rheumatologist and general physician with a sub-specialisation in musculoskeletal medicine and Ehlers-Danlos syndrome (EDS). Trained in New Zealand, and graduating in 1993, he has been working in private practice since 2006. Dr Burling studied musculoskeletal medicine under Dr Kenneth Orr and applies the techniques of strengthening injections to EDS patients. He now has many hundreds of patients with EDS and is active within the international EDS community, seeking ways to provide even better care for people affected by this syndrome.
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
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
Looking for interesting things to do? Keen to learn something new? Want to plan respite activities for the summer?
Carers NZ has launched its ‘discovery portal’ to help you find these opportunities and more. There are hundreds of options across NZ and online – check it out!
Outward bound New Zealand
Outward Bound New Zealand offer a number of short courses for people aged 13+ living with impairments & disabilities.
Click here to learn more about what is available.
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