EDSers United

11/04/2024

Ehlers-Danlos syndromes (EDS) are a group of inherited disorders that profoundly affect connective tissues, primarily the skin, joints, and blood vessel walls. Connective tissues play a crucial role in providing structural strength and elasticity to various bodily components, primarily through proteins like elastin and collagen. However, people living with EDS have less stable collagen, often resulting in compromised connective tissue integrity. This condition can have far-reaching implications, affecting nearly every organ system, and often leading to significant co-morbidities and even reduced mortality.

Learn more about EDS at https://www.rare360.life/post/understanding-ehlers-danlos-syndrome-eds

Participate in hEDS Research at https://www.rareadvocacymovement.com/hedsresearchstudy








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02/18/2024

Sensory Profiling in Classical Ehlers-Danlos Syndrome: A Case-Control Study Revealing Pain Characteristics, Somatosensory Changes, and Impaired Pain Modulation

Pain is one of the most important yet poorly understood complaints in heritable connective tissue disorders (HCTDs) caused by monogenic defects in ext…

05/06/2023

Happy EDS Awareness Month!

Every 4th Sunday of the month, a Zoom meeting time slot is held from 1pm ET to 2pm ET for EDSers to join in and speak about their journey, day or to just make friends who get it.

This month the meeting will be held on May 28th.

You can subscribe to receive a calendar invite here: https://form.jotform.com/223527978189070

Happy EDS Awareness Month Fellow EDSers!

The Rare Advocacy Movement - RAM has recently launched a variety of collaborations and one of them is called the Adults Living Rare Initiative. Within this initiative one of the main topics of discussion is medical PTSD (a condition that most of us know all too well).

If you are looking to speak about your experience with medical PTSD in a private forum, amongst friends who get it, you are welcome to join EDSers United each 4th Sunday of the month at 1pm ET. https://www.edsers.com/nj-community-support-program.html

For those of you community-based activists seeking to help others within the community, by discussing the lessons learned through your personal lived experiences, you're encouraged to connect with RAM https://www.rareadvocacymovement.com/contact.

05/01/2021

Happy EDS Awareness Month Fellow EDSers!

The Rare Advocacy Movement - RAM has recently launched a variety of collaborations and one of them is called the Adults Living Rare Initiative. Within this initiative one of the main topics of discussion is medical PTSD (a condition that most of us know all too well).

If you are looking to speak about your experience with medical PTSD in a private forum, amongst friends who get it, you are welcome to join EDSers United each 4th Sunday of the month at 1pm ET. https://www.edsers.com/nj-community-support-program.html

For those of you community-based activists seeking to help others within the community, by discussing the lessons learned through your personal lived experiences, you're encouraged to connect with RAM https://www.rareadvocacymovement.com/contact.

11/23/2020

Have you read this Washington Post article yet? If you haven't, you should check it out ...
https://www.washingtonpost.com/health/medical-mysteries/the-unusually-flexible-joints-that-gave-her-a-boost-in-gymnastics-portended-a-malady-that-took-years-to-diagnose/2020/11/13/d47ab53c-0667-11eb-9be6-cf25fb429f1a_story.html?fbclid=IwAR3XGPH973hZauu0P4Q7tjQtrHwr6Eb_ag7gdqpaTmDZRI-QBiFyPbbeNPA

A New York handbag designer has struggled to cope with her confusing condition.

06/16/2020

Well written article from a fellow EDSer!

"Here's what you don't see on the outside."

05/19/2020

The Mighty's Guide to EDS is fairly comprehensive. If you're an , definitely check it...

https://themighty.com/2019/06/what-is-ehlers-danlos-syndrome/?utm_source=newsletter_ehlers_danlos_syndrome&utm_medium=email&utm_campaign=newsletter_ehlers_danlos_syndrome_2020-05-19&$deep_link=true

See what leading experts and 750 people with Ehlers-Danlos syndrome have to say.

03/10/2020

!!!!COVID-19 UPDATE!!!! Regarding the March 22nd In-Person Meeting:

We have made this decision out of an abundance of caution regarding COVID-19, and to prioritize the health and safety of our meeting attendees by CANCELING the IN-PERSON Community Support Group Meeting this March 22, 2020 and instead HOSTING a VIRTUAL Meeting. Below are the details for the Virtual Video Meeting via Zoom.

Visit the following link to learn more:

NJ EDS Support Group Meeting Information

03/09/2020

If you haven't completed the Adults Living Rare Survey yet, there is still time! The survey closes March 31st. If enough EDSers take the survey, we will have data on the effects of EDS on adults which can be used to inform assistance programs for people with EDS in the future. Please participate and make sure our voices are heard!

Go to https://www.rareadvocacymovement.com/adultslivingrare to take the survey and please share and encourage your friends and family to take the survey as well.

01/04/2020

To all EDSers who are taking CBD... check out this public safety alert.



PUBLIC SAFETY ALERT!

Not one CBD product recall has been issued regardless of hundreds of CBD products failing third party testing.

Why?

Because the CBD industry isn't regulated with enforceable laws, like most food product industries. Recalls are made at the sole discretion of the brand owners and manufacturers, and only 1 company is practicing Responsible Distribution within the CBD industry.

Educate Yourself and Choose to Be Responsible.

**P

12/27/2019

The role of vitamin D deficiency in Connective Tissue Disorders https://youtu.be/24q1XSDvlsM

Webinar held on 10th December 2019 by professor Maurizio Cutolo Maurizio Cutolo is Full professor of Rheumatology at University of Genoa: Former President of...

11/21/2019

Great food and hypermobility disorder presentation

DAY 1 SPEAKER 4 11.15 Managing PoTS – Dr Lesley Kavi, PoTS UK