Welcome to EDS Needs, your source for
Every Day Simple Needs associated with Ehlers Danlos Syndrome, a heritable genetic disorder.
I have created this page in hopes that it may serve as a hub for those of us who suffer in silence. A place of refuge where we can learn, connect and hopefully better our quality of life through shared experiences, knowledge and inspiration.
This site may change as it grows to reflect the needs and requests of the readers. I wish to impart a sense of community through meaningful interaction and shared input.
Please do not hesitate to email me with your questions and suggestions through the contact form at the bottom of this page.
May is ehlers danlos awareness month!
Spread the word! Click on any photo above to go to the Awareness4EDS Instagram page, or click here to go to the website!
Check out the newest blog post on the
Share your Rare!
NEWEST ON THE CURRENT EHLERS-DANLOS SOCIETY RESEARCH PAGE
There are currently 8 Clinical trials on ClinicalTrials.gov actively recruiting for Ehlers-Danlos Research. Vascular, Hypermobile, small fiber neuropathy, constipation in children, copper deficiency, and chronic pain patients to name a few. Some studies implement injections or surgeries. So this may be beneficial for those needing overdue relief, and for those who can help with researched based studies, lets get a database going!
Click the #ZebraStrong to purchase a shirt, and the Learn More button below to visit ClinicalTrials.gov.
This space was created out of a need for community and information for our growing community. EDS is considered a rare genetic disorder, however we are often misdiagnosed, and our numbers are probably greater than we realize. Until we find a reason the only learn from each other on our unified journey for answers and compassionate intervention.
I implore you to take action on your journey with EDS. Let's change our future, and light a path for our children so that this may not be one of the first things they find when they begin their journey of understanding their illness. Until we find the gene that is responsible for our multi-systemic predicaments, focus should be on the intervention of knowledge and education. If you partake in any type of charitable giving, please consider donating to some of the amazing organizations listed on the donation page.
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