eds

The Ehlers-Danlos syndromes (EDS) are a group of 13 disorders, clinically defined through features of joint hypermobility, skin hyperextensibility, and tissue fragility. Most subtypes are caused by mutations in genes affecting the structure or processing of the extracellular matrix (ECM) protein...

This is a long article about someone with EDS. Nil-by-mouth foodie: The chef who will never eat again - BBC News By Kirstie Brewer BBC News Loretta Harmes hasn't eaten for six years, but she hasn't lost her passion for cooking. Even though she cannot taste her recipes, she has a growing...

Full title: Ehlers–Danlos syndrome-associated craniocervical instability with cervicomedullary syndrome: Comparing outcome of craniocervical fusion with occipital bone versus occipital condyle fixation Abstract Introduction: Ehlers–Danlos syndrome (EDS) predisposes to craniocervical...

Full title: Prevalence of gastrointestinal, cardiovascular, autonomic, and allergic manifestations in hospitalized patients with Ehlers-Danlos syndrome: a case-control study https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/keaa926/6067343

Open access, https://www.mdpi.com/2077-0383/9/7/2143/htm

https://www.sciencedirect.com/science/article/pii/S0925443918300061

full article here https://overland.org.au/2019/11/anti-vax-anti-science-and-the-pitfalls-of-sharing-a-rare-condition-with-a-celebrity/

https://www.bmj.com/content/367/bmj.l6095.full Extract:

Saw this on TV by chance. Found it on the internet.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5944489/#__ffn_sectitle

Mast cell activation syndrome: Importance of consensus criteria and call for research, Valent, Peter et al. 2018, Journal of Allergy and Clinical Immunology, Volume 142, Issue 3, 1008 - 101, https://www.jacionline.org/article/S0091-6749(18)30854-6/fulltext (letter to the editor) I found this...

The Phenotype of the Musculocontractural Type of Ehlers-Danlos Syndrome due to CHST14 Mutations https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5115638/ Abstract The musculocontractural type of Ehlers-Danlos syndrome (MC-EDS) has been recently recognized as a clinical entity. MC-EDS represents a...

With her blonde hair, youthful complexion and brown eyes, Ashleigh Harley looks every inch the model, social media influencer and budding writer and film-maker. But, for Ashleigh, that's a problem she is addressing in a new documentary. Ashleigh is one of millions of people who live with a...

Concerns about craniocervical instability surgery in ME/CFS CCI/AAI has little in common with ME/CFS Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial...

Moderator note: This post has been copied and posts responding to it have been moved from this thread: Jen Brea: My ME is in remission Hypermobility is also discussed on this thread: Concerns about craniocervical instability surgery in ME/CFS Jen, we need to be careful here. hEDS does not...

In addition to ME/CFS, do you have a diagnosis of any of the following conditions? Endometriosis Fibromyalgia Hypermobility/Ehlers Danlos syndrome Interstitial Cystitis Irritable Bowel Syndrome Jaw pain - Temperomandibular Jaw Dysfunction Migraine Multiple Chemical Sensitivities Postural...

Paywalled at https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.a.61055

Dr. Peter Vadas - CME Presentation: Mast Cells Gone Wild - Mast Cell Activation Disorders First 20 minutes are an introduction and offsetting MCAS against mastocytosis. After that he focuses on the type of MCAS that overlaps with POTS and EDS, mentioning the following article: JJ Lyons et...

The main paper in NZ is running a series of articles on people getting diagnosed with fictitious illness disorder. It seems to be people with EDS suffering from this. Here are the links to the articles so far: https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12133645...

Hi all! I'm working to improve the quality of information for patients with ME, fibro, EDS, POTS, mast cell activation disorder having surgery as well as crowdsourcing a set of best practices for hospitals. The former will eventually be packaged into handouts patients can give their surgeon...