This issue:
Commitee Update
Newly Diagnosed Seminar
Clinical Advisory Panel
The Ehlers-Danlos Society update
Hubs
Patient stories
Resources
Fundraising
Community news
Rewardhub – shop normally and earn donations for us!
Welcome to November
We had a great catch up with those who attended our support call, we would like to continue these sessions on a bimonthly basis – we will plan our next online support call for January.
As the seasons change we can find ourselves with either symptoms getting better, or symptoms getting worse, it really speaks to how diverse our experiences can be. 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
Jennifer in Whakatane had a catch up last month and had this to say:
There will be an additional catch up in Whakatane on November 2 at 2pm at Blueberry Corner – More info in the hubs section
” Northland Hub met at Quail Cafe Whangarei early in October. As always it was good to make new connections as well as seeing some lovely regulars. Our discussions are always lively and varied. I think I’m going to have to learn to crochet. I had a touch of FMO after seeing photos of some amazing creations.
Our next meeting is at Eutopia Cafe 10am Wednesday 1st. November. The December meeting will be in Whangarei early in the month.
All meetings are posted on the Northland Hub page. “
We hope you enjoy this newsletter – If there is anything else you’d like to see in these mail blasts, please let us know.
Previously noted –
We are still working towards having a draft for our members booklet by the end of the year. We have some amazing help from our Clinical Advisory Panel; 12 amazing clinicians from across New Zealand, covering multiple disciplines who are donating their time to us.
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 November 11th, Saturday at 10.30am
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.
Anita Crawshaw ( clinical director of The Hypermobility Clinic ) and Caron Orelowitz (podiatrist) Will be available to discuss general questions at the end of the presentation. Given with summer approaching, its a great time to get some tips on how to deal with summer living.
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 you are unable to attend a session, we can hope to address these concerns 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
EDS ECHO Summit Series:
Fatigue – Causes and Management
The EDS ECHO Summit Series: Fatigue – Causes and Management is a virtual event took place on October 21, 2023. During this event we will cover all aspects of fatigue causes and management in EDS and HSD, with presentations, research, and management information from leading experts.
Information for this session will uploaded in following weeks
Sun-Spider Features in “Spider-Man: Across the Spider-Verse” Movie
We are delighted to see Sun-Spider in the new blockbuster Spider-Man: Across the Spider-Verse movie!
The fan-created Sun-Spider character has Ehlers-Danlos syndrome and uses crutches (complete with spiderwebs) and a wheelchair. Charlotte Webber (Sun-Spider) must balance her life between student and superhero, all while living with Ehlers-Danlos syndrome.
The character was created by Dayn Broder who will join us at our Global Learning Conference for a keynote talk on “Finding your superpower when living with EDS or HSD!”
Disabled actor, Danielle Perez, provides the voice for Sun-Spider in the movie.
Externally Led Patient-Focused Drug Development Meeting
October 31, 2023
We invite community members, carers, and healthcare professionals to join the free, virtual Externally Led Patient-Focused Drug Development Meeting on October 31, 2023.
This meeting will facilitate an understanding of the impact of EDS and HSD on individual’s lives, and the current treatments, care, and research available.
The meeting will culminate with the development of a Voice of the Patient report based on the information provided by patients and patient representatives during this meeting.
The meeting will highlight:
- The need for therapies in the management of the complex presentation of hypermobile EDS (hEDS) and HSD.
- The degree to which the untreated symptoms affect the daily life and quality of life of individuals with hEDS or HSD.
- The difficulties patients have obtaining therapies or drugs outside of the US for their condition.
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.
New Research: The Impact of Podiatric Intervention on the Quality of Life and Pain in Children and Adolescents with Hypermobility
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
There will be a coffee catch up in Whakatane on November 2 at 2pm at Julians Berry Farm (pending weather). Keep an eye out on Loosely Speaking & the BOP Hub page for any updates. Meeting location will be confirmed by 12 noon on November 2.
Our next meeting is at Eutopia Cafe 10am Wednesday 1st. November. The December meeting will be in Whangarei early in the month.
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
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.
If you wish to purchase any of these products, or would like to have them available for an event you’re holding, click here.
Don’t forget to have a regular look at our website to stay up to date with any changes and additions.
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!
Free wellbeing events
Carers NZ will offer online get togethers throughout 2023 to help you plan, make decisions, and improve your wellbeing. The events will feature topics based on your feedback about what you would enjoy – an hour of time just for you. We’ll be sharing details soon for a schedule of sound baths with Sophie Correira, financial decision-making with a well-known advisor, guided breathing and meditations with Anna Filliol, fun drumming sessions, and lots more. Thanks to everyone who shared ideas – we’re looking forward to bringing you this programme and we’re also looking at some ‘real world’ wellbeing events around the country. Let us know if you’d like to stay informed about these events, all of which are free.
supportteam@carers.net.nz
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.
Kia Noho Rangatira Ai Tātou is a unique education programme that aims to build understanding of disabled people’s rights and self-determination, from the unique cultural context of Aotearoa.
This workshop is useful for disabled people, family/whānau and those working with disabled people either in the sector or wider community.
Wednesday 8 November and Thursday 9 November, 9:30am to 3:30pm, in-person Wellington Register here.
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