I have EDS, now what?

This page contains helpful links, resources, medical articles and pertinent information for those who are seeking an Ehlers-Danlos diagnosis, or who are recently diagnosed and would like to learn more. Many times people think, “I have EDS, now what?” This is where this page of resources can be very helpful.  All resources are taken from the websites of EDS organizations, learning conferences and from people who work within the community. One of the best things patients can do for themselves, is to spend the time going through information presented by those who regularly diagnose, treat and research Ehlers-Danlos Syndrome and other connective tissue disorders.  Because EDS presents so differently in each one of us, having a solid fundamental knowledge on EDS, is critical to helping find ways you CAN help yourself vs. focus on how you CAN’T.  A social media and support group only education is not enough.  Take the time to go through the information and listen to the free webinars. You will gain a much greater understanding of EDS in general, as well as your particular case of EDS and how best to live well, while living with EDS. 

I have EDS, now what?

Information, resources & links related to Ehlers-Danlos Syndrome

General EDS Information:

– What is Ehlers-Danlos Syndrome?
Why the Zebra? And what does it mean?
EDS Signs & Symptoms
How is EDS Diagnosed?
The Beighton Score for joint hypermobility
The Brighton Criteria for Ehlers-Danlos syndromee
Types of EDS
Other types of EDS info
Common Questions about Ehlers-Danlos Syndrome
Emergency information & Vascular EDS Information:
Vascular Type EDS is considered the most serious form of EDS due to the possibility of arterial or organ rupture. If a patient presents with signs of chest, abdominal pain (etc.) it should be considered a TRAUMA SITUATION. Patient complaints should be immediately investigated using MRA, MRI, or CT-Scan testing — not x-rays.”
EMERGENCY and Vascular EDS Information Page
EDNF’s Vascular EDS Emergency Information
Clinical Reference Manual for Vascular EDS
Vascular EDS Medical Resource Guide
– EDNF’s Vascular EDS Quick Reference Guide
EDNF’s Understanding Vascular Complications
Connective Tissue Disorder Research – webinar recording (Hal Dietz, MD)
Introduction to Ehlers-Danlos Syndrome webinar (Dr. Brad Tinkle) by EDS Awareness
– Dr. Collins’ presentation on Connecting issues with EDS
– Update on EDS Research – Dr. Lee EDNF 2014  Conference
– Mt. Sinai overview of EDS presentation (discusses Kinesiophobia and importance of exercise)
– EDS UK’s one day conference presentations (from May 2015)
EDNF’s 2015 Conference Presentations
– EDNF’s 2014 Conference Presentations
– EDNF’s 2013 Conference Presentations
– EDNF’s 2012 Conference Presentations
– EDNF’s 2014 Physician’s Conference Presentations
Self-Management for the EDS Patient
EDS Support Group information:
Ehlers-Danlos Support UK, offers both local support groups and message boards:
EDS Awareness also lists the names of local EDS Support group and you can search their site for one in your area
EDNF’s Online Support Community
EDS Awareness upcoming free learning webinars
All previous webinars by EDS Awareness
EDNF’s Webinars
EDNF’s EDS Resource Guides
Hypermobility Association’s List of various help topics
EDS UK’s useful information links
EDS UK’s disability resources
EDS UK’s child protection and Ehlers-Danlos resources
EDNF’s Center for Clinical Care and Research: All appointments will be made through the Genetics Department. Please contact them at: 443-849-3131
EDS Awareness downloads and printables
EDS knowledgeable companies and organizations:
EDS Wellness
Ehlers-Danlos National Foundation
– EDS International
Annabelle’s Challenge (Vascular EDS)
EDS Today
EDS Awareness
Fitness for Health/Bethesda Physiofitness
Physiotherapy Associates
– Movement, Balance and Sports Medicine
EDS Related Events:
Wellapalooza 2015 – Integrative Health and Wellness Conferences
2nd Annual “EDS Ride for A Cause” in November 15th, 2015 at Zengo Cycle in Bethesda, MD!
Moving Naturally with Hypermobility Seminars
front_cover_smallEDS related books: 
Our Stories of Strength – Living with Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome and your Eyes
Joint Hypermobility Handbooks – Management of Ehlers-Danlos Syndrome
Living Life to the Fullest – A Guide to a better quality of life with Ehlers-Danlos Syndrome
– Isobel Knight is a medical writer with Hypermobility: Click here to read about her books
An Accident Waiting To Happen
List of other related books
IMG_7689Helpful Pages and Posts:
What EDS looks like under a Microscope
– EDS on a cellular level and why that is important to moving your DNA
– The story that made me cry
– The 5 for living well with a chronic illness
– The Just 5 Minutes Rule and why it works
– Living with an invisible illness – Invisible Illness Week 2015
– What is an Invisible Illness?
– Managing your Hypermobility EDS – Summary of latest information (late spring/early summer 2015)
Top 10 Nutritional Tips for living well with EDS
Alkaline vs. Acidic 
EDS and Physical Therapy/Exercise: 
Common questions and answers with EDS and exercise (3 post series)
EDS on a cellular level and why it’s important to “Moving your DNA.”
My butt if flat! Why sitting too much, causes chronic pain, muscle atrophy and problems moving around.
– The importance of exercise in the expression of our DNA and the role of epigenetics
The Just 5 Minutes Rule and why it works
– Yoga and EDS
– Strengthening your gluts for pelvic and SI-joint stability
Exercise is medicine for EDS webinar summary
– Strengthening the gluts and shoulders for proprioception and stability
– EDS Fit Tip
Proper Neck Alignment
– EDS Exercise and PT information
EDS and Emotional/Mental Health:IMG_4220

The EDS Spiral 
What does the EDS Spiral really look like?
Importance of focusing on the positive
10 ways I’ve changed my Negative Nelly DNA
15 essentials for a successful career while living with a chronic illness 
– Picky Eating and its relationship to anxiety and depression in kids
– How I’m moving my DNA with EDS
– Climbing out of the EDS Spiral – My Zengo Story
The Just 5 Minutes Rule and why it works
– Living with EDS
– Finding Strength, Flexibility and Health while living with EDS
EDS and Chronic Pain: 
– Ehlers-Danlos & Pain Fact Sheet
– Pain is weird article
Managing Chronic Pain with EDS
Long car rides and living with chronic pain 
U.S. Pain Foundation
Misc. EDS Information:
Newly published research
New disease cluster (EDS, POTS and MCAS)
New EDS/MCAS type – A familial connection between mast cell disorders, EDS and dysautonomia
New EDS type – OI/EDS variant
– Ehlers-Danlos Syndrome in patient with adrenal hyperplasia
– Ehlers-Danlos syndrome hypermobility type linked to chromosome 8p22-8p21.1
Genetic Testing
1. Ambry Labs
2. Center for Human Genetics, Inc.
3. Center for Human
4. Drug Metabolism Testing
– Ehlers-Danlos and Dental Issues
What does Strength/Flexibility/Health/EDS mean?

EDS Comorbid Conditions

FullSizeRender-23EDS, Crainocervical Instability and related conditions:

– TMJ & CCI from 2014 EDNF Conf
Life as Bobble Head
EDS and Mast Cell Activation Disorders: FullSizeRender-12
Dr. Theo’s webinar on Mast Cell Activation Disorders by EDS Awareness
– Dr. Maitland’s Presentation on MCAS from 2014 EDNF Conference
– Mast Cell Activation Disease – A concise guide for diagnostic workup and therapeutic options
Diagnosing Mast Cell Activation Syndrome – 4 post series
IMG_4095EDS and POTS/Dysautonomia: 
– New disease cluster (EDS, POTS and MCAS)
A familial connection between mast cell disorders, EDS and dysautonomia
– What is Dysautonomia
IMG_4059EDS and Chronic Fatigue:
– Dr. Pocinki’s presentation on Chronic Fatigue, Sleep and autonomic dysfunction with EDS
Chronic Fatigue Syndrome and EDS
Chronic Fatigue Syndrome finally being recognized as a true medical condition
EDS, Chronic Pelvic Pain & Pregnancy (including other gyn & bladder conditions): 
Ehlers-Danlos in pregnancy webinar by EDS Awareness
EDS and Pregnancy by Dr. Jaekle
– EDNF’s 2013 Conf Pres EDS and Pregnancy
Chronic Pelvic Pain & EDS
– Article on Pelvic Floor Instability physical therapy
Chronic Pelvic Pain Organization and Resources
What are some of the Ob/Gyn issues in Ehlers-Danlos syndrome
“All patients should see a geneticist to determine the specific type of EDS that they have, but patients considering pregnancy must receive genetic counseling so that they can make informed decisions. In addition to concern about passing EDS on to a child, a woman with EDS has an increased risk of miscarriage, premature rupture of membranes, premature births, cervical incompetence and pre-mature labor. During pregnancy there is an increase in the hormone, relaxin. Relaxin causes the connective tissue to become looser, thus increasing joint laxity perinatally. This can be so severe that walking is impossible, and causes postpartum complications. Some forms of EDS can cause serious complications such as bleeding and tearing during childbirth. Those with Vascular Type also face the possibility of uterine rupture and hysterectomy.
In connection with a natural delivery, several women with EDS have experienced incontinence, weak pelvic floor, prolapse of the uterus, sprained joints of the pelvis, separation of the symphysis pubis (the joint between the two pubic bones in the frontal lower part of the pelvis) and rupture of the rectal musculature. Some doctors recommend a cesarean section so that the mother’s fragile tissue and/or pelvis are not strained. In connection with the planning of a delivery the doctor and the woman should discuss advantages and disadvantages of a natural delivery compared to a cesarean section.” – Source will be noted
IMG_4216EDS and Functional GI Conditions: 
 Why hypermobility can be a pain in the gut
EDS and GI conditions
Got IBS?

This information is by no means a full list of all resources available, nor a complete list of EDS organizations, events and information. Many times, additional information can be found through a search on this website, or on the website of another EDS related company or organization. If you have any questions, or would like to have your information, company or foundation listed, please email:
*** Please note – The information on this page or the SFHEDS website, is not to be viewed as a substitute for seeking proper medical care. Please read full disclaimer here. 

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