EDS Pathway Scotland

13/08/2026

“Once recognized, never overlooked.”

It’s the philosophy at The Center for Neuro-EDS and Craniospinal Disorders (home of world-renowned neurosurgeon, Dr. Paolo Bolognese). It’s a breakthrough acknowledgment that patients with connective tissue disorders often belong to a subgroup that suffers from complex neurological conditions, like , , , , , , , , , and more.

It is with gratitude that we congratulate Dr. Allison R. Bloom, Dr. Ilene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, Dr. Paolo B. Bolognese, and Dr. Petra M. Klinge on the preprint release of their groundbreaking position paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders.”

Thousands of patients have received life-changing and life-saving interventions as these pioneers in medicine have learned (from the patients themselves) that connective tissue biology often gives rise to a collection of neurological, cranial, spinal, autonomic, neurovascular, and immune-inflammatory manifestations.

An estimated 10-30%+ of hypermobile patients may belong to a neuro-EDS phenotype. At last, there is a vocabulary and a growing consensus around how to recognize this suffering and offer validation, diagnostic clarity, and treatment. We encourage you to learn from this important article, to share it widely, and to become part of the conversation. If you see yourself in this article, we encourage you to show it to members of your medical team so they can, at last, see you too.

It is our ardent hope that this conversation and this work is just the beginning — that neuro-EDS patients, once recognized, will never again be overlooked.

POSTQUAM VISIBILE, NUMQUAM NEGLECTUM

https://www.preprints.org/manuscript/202608.0567

17/07/2026

15/07/2026

*** BIG DAY IN PARLIAMENT FOR EDS CASES ****

Will update later 💜💜💜

09/07/2026

Wow. Check out what is coming to Edinburgh POTS UK

PoTS UK is coming to Edinburgh!

We'll be in Edinburgh on Tuesday 29th September and would love the opportunity to meet members of our PoTS community for an informal coffee and chat.

If you'd be interested in coming along, please let us know by commenting below. It would be lovely to see how many people might be able to join us!

We're also looking for suggestions for a suitable accessible café or venue in Edinburgh where we could host this informal drop-in. If you know somewhere that could work, please comment below or email us at [email protected].

We hope to see some of you there! ☕💜

23/06/2026

A journalist contacted me last week with some really concerning news about the government’s proposed SEND reforms.

According to reports, some parents have been told they cannot publicly campaign on issues related to SEND or even post on their own social media channels if they want to lead parent carer forums that work with local authority officials to influence services for children in the area.

This is worrying enough, but don’t forget that Labour MPs were given pre-written feedback to share with the government after hosting their own constituency events about the SEND reforms.

The whole thing stinks of a government that is trying to avoid scrutiny. Silencing the parents of SEND children, who are the most active in the campaign for reform, makes a complete mockery of the process.

Read the story here: https://inews.co.uk/news/education/warning-shot-send-parents-speak-out-against-reforms-4487051?srsltid=AfmBOoop-utEf48nyr0hW7L0ZupjEcYU8bgFZozJ3Ih0ZdZWKnOIofqZ

15/06/2026

A paper saying it like it is…. Edinburgh papers don’t want these stories 👀

10/10 Glasgow Live

Jo Sinclair said a lack of NHS treatment options and knowledge has caused ongoing trauma 😥

10/06/2026

A 33 year old woman with Ehlers-Danlos Syndrome, reportedly experienced years of severe symptoms including chronic pain, joint instability, and fainting episodes, but her condition was initially dismissed by medical professionals who allegedly believed she was exaggerating or fabricating her illness. Because her symptoms were not taken seriously at first, she was directed toward psychological explanations and experienced delays in receiving appropriate medical care. By the time she was properly diagnosed with EDS by specialists, her health had already significantly worsened. According to the report, she later died, with the case being highlighted as an example of how misdiagnosis and dismissal of “invisible illnesses” can lead to serious and potentially fatal outcomes when patients are not taken seriously early enough.


Copy the link below to read the article:
https://en.newsner.com/health/33-year-old-woman-dead-after-doctor-accused-her-of-faking-symptoms/

06/06/2026

This stuff annoys me…… you can’t give general advice to two different countries where one has a service for EDS and one does not The Ehlers-Danlos Society

Do you live in the UK? 🇬🇧

We are inviting people with an interest in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), and who live in the UK, to take part in a free, online Listening Lab on June 20, 3:00 pm-5:00 pm.

This will be a structured online session designed to hear directly from those navigating care today in the UK.

Register here:
https://www.ehlers-danlos.com/listening-labs-uk/