This issue:
This issue:
Rare disease month
Committee 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 Rare Disease Month!
Rare disease month is about standing together, shoulder to shoulder with each other and those in the wider rare disease community to raise awareness for our journeys.
Show your stripes by using this profile picture frame created by 1 of our incredibly talented committee members.
https://www.twibbonize.com/
Photo example above is my cat, Mia.
And yes, I did ask her permission to share her photo.
We would love to hear your feedback for EDS and Rare Disorders Day.
To celebrate Rare disease/ disorders month we would love to see what that means for you with a word cloud. We’ve shared an example.above.
Click the link above to create your own word cloud using any shape and colour you want.
Photo description: Zebra shaped word cloud example using general words related to HSD & EDS
Rare Disorders NZ is inviting health professional students to take part in a short essay-writing competition during Rare Disorders Month in March to encourage medical students to engage with and learn about rare disorders. The task will be based around the white paper on RDNZ’s Voice of Rare Disorders Survey results from 2023, due for release on 28 February.
There’ll be cash prizes for the top three entries, but most importantly we hope the true reward will be discovering the potential of a fulfilling career within the rare disorders space! Find more details here.
Other events and activities:
30 March: A Rare Kind of Walk Auckland
James McGoram, Rare Disorders NZ’s Board Chair, is raising money for Rare Disorders NZ by walking around Maungawhau (Mt Eden) – again, and again, and again!
He will be starting at 1pm and he thinks it will take him around five hours.
Join James – by walking a few loops of the mountain with him on the day, by donating to his Givealittle campaign, or by sharing this page with your friends and loved ones.
31 March: Rolleston rare disorder community get-together
If you are in the Canterbury region, come meet others in the rare disorder community at this get-together at Rolleston Library (Te Ara Ātea), venue room TBC.
Rolleston Library, 56 Tennyson Street, RollestonRare Beer Challenge 2024
Rare Disorders in the Media
‘Positive, energetic’ 10-year-old struck down with rare disorder
Thousands of Kiwis with a rare disorder let down by health system.
The lonely side-effect of rare disease for Dunedin family.
#GlowUpShowUp: rarest day marks launch of Rare Disorders Month 2024
The harrowing struggle for family with two children who have rare disorders.
As always, our committee are working hard on advocating for our community and encouraging up-skilling amoungst medical proffessionals.
Our next meeting is this coming week so if there’s anything you would like bought to our attention, please email us at contact@ehlers-danlos.org.
Previously noted
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 May 17th Friday at 10am
We will confirm closer to the date, who of our Clinical Advisory Panel will be in attendance for the General Question section at the end.
Please join here : Google Meet 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 hope to address these concerns in subsequent newsletters.
We do have our slides available for viewing here.
Clinical Advisory Panel
They are still working on a booklet to assist those in the diagnostic journey and/ or are newly diagnosed.. we hope to have a first draft of this asap
The Ehlers-Danlos Society update
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 next Bay of Plenty hub catch up with be in Rotorua on Thursday March 28 at 10.30am at Coffee Club Redwood Center.
Jennifer (our BOP hub leader) will have a zebra scarf with her so you can find the table, and will post on the hub page explaining where the table is.
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.
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
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
Track the sun’s radiation
The ultra violet index (UVI) measures the levels of ultraviolet radiation from the sun. The uv2Day app shows UVI information all over New Zealand, so you can take more care in the sun. Check out our review.
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