The Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders. Connective tissue is found throughout the body and is an important component of the skin. Problems with connective tissue can cause changes in the skin.

People with EDS may have skin

So I got the proclamation from the Mayor’s Office this morning declaring the month of May 2024 as Ehlers-Danlos Awareness Month!! Pretty proud of this! The Ehlers-Danlos Society Mayor Ken Sim

For me personally, LDN has been a huge help. It would be fantastic to see more education made available for PCPs to widen the net of availability beyond pain management specialists.

Day 24 - A Day with EDS #myedschallenge #EhlersDanlosSyndrome #EDSAwareness ⁦The Ehlers-Danlos Society⁩ ⁦Ehlers-Danlos Support UK⁩
youtube.com/shorts/wl5ZIdP…

Go check out my fundraiser for May Awareness Walk and Roll Challenge 2024 on @Tiltify | tiltify.com/@pinkymonfire/… The New York Times KMBC KCTV5 News KSHB 41 News Sharice Davids City of Overland Park, Kansas Michelle Obama Im going to keep tagging you ma’am because you get it done I need bodies to walk & roll & video DMs

#MyEDSChallenge
May Awareness Day 25–'Barriers to Care' for #EDS .

My May 2021 @ piece was published before my #Autism diagnosis in May 2022. There's little recognition that an #EUPD misdiagnosis in itself is a 'barrier to accessing healthcare'.

pubmed.ncbi.nlm.nih.gov/34039615/

Thank you Etel Haxhiaj (ha-jee-eye) for helping make this happen in City of Worcester, looking forward to sharing with the council info on EDS + why it's important to recognize & spread awareness of rare illnesses/disorders.
Thank you The Ehlers-Danlos Society for the resolution text & #EDSawarenessmonth

As it's Ehlers-Danlos Awareness Month, we thought we'd highlight The Ehlers-Danlos Society.

The Ehlers-Danlos Society is an organisation dedicated to accelerating research and education in Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Visit ehlers-danlos.com

#MyEDSChallenge
Day 24 – A Day with EDS or HSD
There is no typical day for me living with EDS due to the fluctuating nature of the overlap between several conditions. However my self-care routine of meditation, time in nature, yoga, and nutrition helps keep me as well as possible

Orange for EDS and HSD awareness! Thank you to Chrissy van Dijk for taking the #MyHSDChallenge and Light It Up Challenge this May. Chrissy raised awareness in Rotterdam, Netherlands🧡🦓

Follow Chrissy at instagram.com/zebra.tracks/

Low-dose naltrexone (LDN) has been used to treat chronic pain. There is, however, no agreement on effective dosage, leaving clinicians without guidelines on initiating treatment with naltrexone.

A recent research study focused on understanding effective dosing for LDN through an

“I was diagnosed with Ehlers-Danlos syndrome (EDS) after my ophthalmologist noted some specific issues with my eyes and insisted that they be investigated. Despite being diagnosed at a major research university hospital with supporting cardiac, ophthalmologic, dermatologic and

Guiding keeps me active and motivated and is always a constant in my life. Even if I’ve had to adapt by using my crutches or wheelchair at camps and events, I can still be me. 💙
The Ehlers-Danlos Society
Ehlers-Danlos Support UK
#myEDSchallenge

#MyEDSChallenge
May Awareness Day 22 – 'Hobbies and Passions'
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One of my main hobbies and passions is LEARNING and STUDYING about #EDS !!! This helps my self-management but I also love learning.

This was an afternoon's worth of reading for me last week:

Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.

Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia

Come listen to our PI Dr. Manocha talk about #depression and #hypermobility ISPRM! Thanks to our funders The Ehlers-Danlos Society Alberta Innovates Hotchkiss Brain Institute (HBI) DCNS Calgary isprmsydney2024.com/free-papers-cl…

Javier started to have symptoms around the age of 5 with bruises that did not disappear (mainly on his legs, from the knees down), wounds from minor blows, and difficulty healing. Throughout his childhood he struggled with symptoms, not knowing what he had or how to treat it.

Day 21 - World #Meditation Day - #Gratitude #myedschallenge ⁦The Ehlers-Danlos Society⁩ ⁦Ehlers-Danlos Support UK⁩
youtube.com/shorts/XUSUY07…

“You can still live a full life—you just have to understand that your body’s user manual may differ from that of someone who doesn’t have EDS,” - Dr. Isabel Huang sheds light on the genetic condition Ehlers-Danlos syndrome in Prevention Magazine bit.ly/4avsCIO

Special thanks to Caitlyn for raising awareness of #EhlersDanlosSyndrome and our Acts of Awareness Challenges for EDS and HSD Awareness Month this May! Caitlyn joined BBC Essex today with President The Ehlers-Danlos Society, Professor Lara Bloom, discussing the challenges of accessing diagnosis and