EDS4Ire HSD4Ire Campaign

On Saturday 3rd August at 8pm (UTC+1) we invite everyone, regardless of neurotype, to join us on Zoom for an event highlighting the links between Ehlers-Danlos syndrome (EDS) and Neurodivergent people (ND).

🔗🔗🔗 Sign up to receive the Zoom link here https://forms.gle/acjRvyky3FPNT7336

Please note Zoom links will be sent on the day of the event.

♾️🦓 In July Neuro Pride contributor MAQQI sat down with Dr Jessica Eccles for a recorded interview about the links between Ehlers-Danlos syndrome (EDS) and Neurodivergent people.
🖥 To begin this event we will be showing that interview on Zoom for everyone to watch.
🗣 Following the viewing, we will be joined by MAQQI for an open discussion about the interview and our own experiences and knowledge about the subject.

📝 You can find out more about Dr Jessica Eccles and read their research here

Linktree: linktr.ee/bendybrain
X / Twitter:
Instagram:
www.linkedin.com/in/jessica-eccles-6447a97b/
www.researchgate.net/profile/Jessica_Eccles

🖼 The text on the image reads Neuro Pride Ireland EDS + Neurodivergent Links Sat 3rd Aug 8pm on Zoom
Image Description
Pink and Purple background in the right hand top corner is rainbow infinity symbols on a green cloud, in the left hand bottom corner is a zebra on a green cloud, there is also a black and white infinity symbol.

If anyone can donate a few quid to Disability Power Ireland for Disability Pride Parade this year, please do -

Donate to The Disability Pride and Power Parade 2024, organized by Maryam Madani ⚡ DATE CHANGE ⚡ Due to the IPSC Palestine March also scheduled for July 20th… Maryam Madani needs your support for The Disability Pride and Power Parade 2024

Ireland's Disability Pride Parade returns to Dublin with full-day festival The Disability and Power Pride Parade will return to Dublin this July 27 for a day-long festival full of incredible performances.

Free Travel Applications Officially open Free Travel scheme expanded for those medically unfit to drive for at least a year - as advocated for by Epilepsy Ireland.

The world’s top specialists diagnosed this Canadian’s medical condition. Now Gavin Ward is boss of Arrow McLaren at this weekend’s Toronto Indy Toronto native has Ehlers Danlos Syndrome, which encompasses several different disorders that can lead to things like skin that stretches beyond the normal range and tissue fragility that can cause ruptures in blood vessels and intestines.

✨If you can afford to give anything towards this event check out Disability Power Ireland GoFundMe link https://www.gofundme.com/f/the-disability-pride-and-power-parade-2024✨

📢 Reminder that we will be marching at Disability Power’s Disability pride parade on Saturday July 27th. If you would like to come stand/ sit with us (Autism Louth and EDS4Ire HSD4Ire Campaign), then message us! 🤗
You don’t need to be disabled and/ or autistic - Friends, family and general allies are encouraged to support us! - EVENT: Autism Louth at Disability Pride Parade

Are you counting down to your well deserved summer holiday?

Don't forget to take the 'Emergency Information for Medical Professionals' document with you available translated into 8 different languages:
🇫🇷 French
🇩🇪 German
🇬🇷 Greek
🇮🇹 Italian
🇵🇱 Polish
🇵🇹 Portuguese
🇪🇸 Spanish
🇹🇷 Turkish

Order your translated vEDS emergency information here: https://www.annabelleschallenge.org/travel-advice

HSE chief says recruitment freeze to end tomorrow The recruitment freeze was introduced in October last night.

'I couldn't sit up without fainting - doctors brushed symptoms off as anxiety' Crystal Bradley, 23, from Boston, Massachusetts, US, was left completely housebound and began fainting regularly before she was diagnosed with Ehlers-Danlos syndrome

Each person with Ehlers-Danlos Syndrome has a different set of symptoms and comorbidities, even within an immediate family. This is part of why so many doctors miss the diagnosis or get frustrated trying to figure out how to help someone, and why family members may be in denial about their own EDS. There is no blanket cure-all or treatment. Each individual must be looked at individually.

Did you know that July is disability pride month? ✨

The Disability Pride Flag has 6 colours that all represent something. Green represents sensory and perception disabilities, blue represents psychiatric disabilities, white represents undiagnosed and invisible disabilities, gold is for neurodivergence and red represents physical disabilities. The background colour represents lives lost to ableism

The flag was created by Ann Magill and was changed in 2021 from a zigzag pattern to straight lines to make it more accessible!

I am disabled and proud 💜👩🏻‍🦼

[ID: the first image is an illustration of a white woman in a rainbow tiedye T-shirt celebrating and throwing colourful confetti. Behind her is the disability pride flag. Above the flag is text that reads “happy disability pride month!” in rainbow colours]

Talking about our illness and how it affects our lives isn't being negative, it's being real about what we're experiencing 💊🌼

Having a chronic illness is difficult and being able to talk about the way it impacts our lives can be a massive help for many of us

Telling us to "stop being negative" doesn't help one bit. It's dismissive of the fact we want to (and should be able to) speak freely about what we're going through and be supported while doing so

Many people with chronic illness want to talk about their illness because it's a huge part of their life and other chronically ill people don't want to talk about it. Both people should be respected and supported ❤️

[ID: An illustration of an Asian woman with a nasal feeding tube and rainbow eyeshadow. On her left side is a sentence that reads "Talking about our illness and how it affects our lives isn't being negative, it's being real about what we're experiencing". The background of the drawing is yellow and in two corners of the drawing are rainbows]

Vascular EDS is a genetic condition caused by an alteration, also known as a mutation, in a gene called COL3A1. This gene is the instruction for making collagen type III. When the gene is altered it causes a lack or deficiency of this collagen. This leads to disordered packing of collagen fibres making the connective tissue less effective, particular in blood vessels, hollow organs and the skin.

Blood vessel dissection and rupture as well as hollow organ rupture are potentially fatal consequences of vascular EDS. Evidence suggests that having a correct diagnosis made, with appropriate clinical management and long-term follow-up improves survival for vascular EDS patients.

Patients with vascular EDS should avoid any invasive tests or invasive treatments unless strictly necessary. Invasive techniques that are routinely arranged for other patients could damage the fragile tissues and organs of someone with vascular EDS. Therefore, once the diagnosis is known, someone with vascular EDS is in a better position to receive appropriate medical care.

We know that day to day, many people with vascular EDS live full and enjoyable lives, outcomes are improved by early diagnosis followed by appropriate management.

Hi! We are a new support group in Co. Louth, arranging face-to-face and zoom meet ups, for Autistic adults 18+

A group for Autistic adults
- Ran by Autistic adults ♾️🌈

Join our Facebook group - Autism Louth (Adult Peer Support) (answer all join questions). Message us to join our community WhatsApp also. You must be 18+ and Autistic and live in Co. Louth, Ireland 🇮🇪 You do not need a formal diagnosis, as we realise it is expensive and a privilege.
However, this is NOT a group for friends and family.

- E T H O S -

🌈 We are Autistic and proud. We don’t “have autism”.

🌈 We don’t “light it up blue” as Autism Speaks is a hate group. We are not a missing puzzle piece either. Our preferred symbols are the infinity rainbow as this is most inclusive.

🌈 We reject over pathology and terms like ASD. “Aspergers” is outdated (and we don’t associate with Nazi’s).

🌈 We recognise the full Autistic spectrum as a circle, and not linear. Therefore we don’t apply harmful terms like “low functioning” and “high functioning”. Our support needs differ and are complex.

🌈 We believe in fully neuroaffirming practices. ABA is abuse, like any form of conversion therapy.

ID: Autism Louth logo. Writing says “Autism Louth, adult peer support”. Rainbow infinity logo to back.

Individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often report increased resistance to local anaesthetics. This phenomenon is not universally experienced by all people with these conditions, but it is notably common.

This resistance is more frequently observed in dental procedures but can occur in other medical settings as well. The exact reasons for this resistance are not entirely clear.

In a 2019 study, the most effective local anaesthetic agents among EDS respondents were articaine, bupivacaine, and mepivacaine, with lidocaine and procaine reported as effective far less often. The most effective agent (articaine) was effective in only 30% of people with EDS: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6834718/

Due to the variability in response to local anesthetics, EDS and HSD patients often require higher doses or alternative pain management strategies. Anaesthetists should be aware of these challenges and may need to adjust their approach to ensure effective pain relief.

Have you found a specific local anaesthetic agent that you've found more effective than others?

Honoured to announce that our clinic has been awarded Center of Excellence by the Ehlers-Danlos Society. This journey started 8 years ago. Looking forward to many more years to come. Thank you EDS Society and to our colleagues and a special thank you to our patients for turning us into experts.

So many assumptions are made about chronically ill people's lives. Please remember you know only a tiny proportion of someone's story 📖

There are so many moments and experiences people don't talk about and they're usually the hardest ones they've had to deal with

Be kind because you can never know all of what someone has been through! 💜

[ID: An illustration of book shelves with rows of books in rainbow order. Each one has name such as "Amelia's Story" or "Faria's Story". On the shelf is a rainbow ornament and a globe. Above the top shelf are rainbow fairy lights. Over the top of the illustration is text that reads "So many assumptions are made about chronically ill people's lives. Please remember you know only a tiny proportion of someone's story"]

Our Easy-to-Read Guide to Voting is now available to view on our Inclusion Ireland website.

🔗 https://inclusionireland.ie/resources/voting/

Please feel free to share and download this useful guide.

"Having VEDS feels like a ticking time bomb - I’m just waiting for the next medical complication to happen that may or may not take my life. The VEDS community absolutely needs money to fund research and save lives. Medical professionals NEED to learn about VEDS. We lose way too many people every year.

Please wear red today, and continue to learn about VEDS everyday."

Bella Marin. ❤

📣Dyspraxia/DCD Ireland are proud to present a new programme for parents/guardians whose children will be starting secondary school in September 2024.

This series of three modules delivered via webinar will help families to support the transition from primary to secondary school, for children with dyspraxia/DCD, by working through some of the more common concerns and anxieties that can occur at this important time. Resources to assist through these transitions will be provided after each webinar.

⭐️Course Dates

**Wednesday 24th January 2024 - 6:30pm
**Wednesday 24th April 2024 - 6:30pm
**Wednesday 21st August 2024 - 6:30pm

To register for the programme please use the Buy Now button at the bottom of our web page Dyspraxia/DCD Ireland - Education for Parents and Families - Transition Modules 2024

**Login details will be sent to your email address the week prior to each module.
**Sessions will be recorded and resources available, if participants are unable to attend a particular date.

⭐️Facilitator

Facilitator Stephen Hodnett is an Occupational Therapist and prior school teacher who has significant experience of working with children with dyspraxia/DCD across both health and education systems. Stephen has facilitated a number of webinars for Dyspraxia/DCD Ireland, as well as facilitating the ‘Our Say In Our Schools’ resource with a number of our members and has highlighted developing awareness and understanding of Dyspraxia/DCD and finding new ways to support people who use our service as two of his goals.

⭐️Objectives of modules 1-3

1. Participants will explore a clear timeline of areas to target throughout the journey from primary to secondary school.
2. Participants will develop their knowledge of the key considerations when selecting a secondary school.
3. Participants will have developed awareness of the supports and resources available to assist during the transition process.
4. Participants will have a greater understanding of the challenges associated with the transition to secondary school.
5. Participants will develop knowledge of a number of pro-active strategies to help children plan and prepare for the transition to secondary school.

The Ehlers-Danlos Society is delighted to announce it has received a $6.7 million funding commitment from the Mike and Sofia Segal Foundation to advance its groundbreaking research initiatives.

This transformative pledge—which includes several gifts by the Foundation—is aimed at shaping a future where individuals living with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) can thrive.

In 1978, Mike and Sofia Segal arrived in the U.S. from present-day Ukraine with $120, a young child, and just two suitcases. They created their family foundation to champion causes that have been overlooked and underfunded. The gift to EDS reflects their steadfast commitment to support cutting-edge treatments for, and educate the public about, a range of rare diseases.

This marks a turning point for both The Ehlers-Danlos Society and the EDS and HSD community. The support from the Mike and Sofia Segal Foundation is invaluable in propelling our research towards earlier diagnosis, better understanding of the complications, and better treatment options.

The foundations we've laid since our inception in 2016 are now paving the way for substantial advancements and positive changes that lie ahead. Together we dazzle!

Read More: https://www.prnewswire.com/news-releases/the-ehlers-danlos-society-receives-6-7-million-from-the-mike-and-sofia-segal-foundation-to-advance-cutting-edge-research-for-ehlers-danlos-syndrome-302019475.html

This is a shoutout to everyone who is just trying to get through the days of this holiday season. 💛

You matter, you are cared for, and you are not alone 🫂

🤍