EDS Resources
Understanding Ehlers-Danlos Syndromes
Finding trustworthy information can be an important part of understanding Ehlers-Danlos syndromes.
The Andrea Foundation For EDS is committed to helping individuals and families find educational resources while encouraging them to discuss individual medical questions and concerns with qualified healthcare professionals.
What Are Ehlers-Danlos Syndromes?
Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders.
Because connective tissue is found throughout the body, EDS can affect people in different ways.
There are multiple types of Ehlers-Danlos syndrome, and the features and medical considerations can vary by type and by individual.
What Is Hypermobile Ehlers-Danlos Syndrome (hEDS)?
Hypermobile Ehlers-Danlos syndrome, commonly called hEDS, is one type of Ehlers-Danlos syndrome.
Generalized joint hypermobility is an important feature of hEDS, along with other criteria considered during clinical evaluation.
Our Foundation has a personal connection to hEDS because our founder’s daughter lives with it.
Every person’s situation is different. Information on this website should not be used to diagnose yourself or someone else. If you have concerns about symptoms or believe you or someone you love may have EDS, discuss those concerns with an appropriately qualified healthcare professional.
The 13 Types of Ehlers-Danlos Syndrome
- Hypermobile EDS (hEDS) — the most common type. Features include joint hypermobility, chronic pain, and fatigue.
- Classical EDS (cEDS) — features include skin hyperextensibility, fragile skin, and joint hypermobility.
- Classical-like EDS (clEDS) — features similar to classical EDS with velvet-like skin texture.
- Cardiac-valvular EDS (cvEDS) — a rare type involving heart valve problems.
- Vascular EDS (vEDS) — the most serious type. Features include fragile blood vessels and organs.
- Arthrochalasia EDS (aEDS) — features include severe joint hypermobility and congenital hip dislocation.
- Dermatosparaxis EDS (dEDS) — features include extremely fragile and loose skin.
- Kyphoscoliotic EDS (kEDS) — features include progressive curvature of the spine and muscle weakness.
- Brittle Cornea Syndrome (BCS) — features include fragile corneas and other eye problems.
- Spondylodysplastic EDS (spEDS) — features include short stature, muscle weakness, and curved limbs.
- Musculocontractural EDS (mcEDS) — features include joint contractures and muscle hypotonia from birth.
- Myopathic EDS (mEDS) — features include muscle weakness and joint contractures.
- Periodontal EDS (pEDS) — features include severe gum disease and fragile gum tissue.
Information about EDS types is provided for educational purposes only and is not medical advice. EDS types and their features can vary significantly between individuals. Always consult a qualified healthcare professional for medical guidance specific to your situation.
Trusted Information Matters
When you are searching for answers, it can be difficult to know which information to trust.
We encourage individuals and families to use reputable medical and EDS resources.
Trusted EDS & Medical Resources
Preparing for a Medical Appointment
If you have questions or concerns you want to discuss with a healthcare professional, it may help to prepare ahead of time.
Consider:
- Writing down your questions before your appointment
- Bringing an accurate list of medications and supplements
- Organizing relevant medical records when appropriate
- Keeping notes about concerns you want to discuss
- Asking for clarification when you do not understand something
- Asking what follow-up steps may be appropriate for your individual situation
These suggestions are for general educational purposes and are not medical advice.
A Message to Families Searching for Answers
Our founder understands what it feels like to search for answers for someone you love.
You may have questions. You may feel overwhelmed. You may wish someone understood what your family is experiencing.
Our Foundation cannot diagnose medical conditions, but we can continue working toward greater awareness, education, advocacy, community, and access to trustworthy resources.
Your questions matter.
Your experience matters.
Your voice matters.
You are not alone.
The EDS Awareness Guide — From The Andrea Foundation For EDS
Written for patients, families, and caregivers who need plain-language information they can actually use. The EDS Awareness Guide covers all 13 EDS types, a complete symptom breakdown, how to navigate the diagnostic journey, how to advocate with doctors, and how to support children with EDS in school settings.
$12.99 — available as an instant digital download
Every purchase directly supports The Andrea Foundation For EDS — a 501(c)(3) tax-exempt nonprofit organization. EIN: 81-2106416. All proceeds fund EDS awareness, education, and community programs.
Important Medical Disclaimer
The Andrea Foundation For EDS provides information for educational and awareness purposes only.
Information provided on this website is not medical advice and is not intended to replace consultation with a qualified healthcare professional.
The Foundation does not diagnose medical conditions, recommend individual treatments, or provide individual medical care.
Always seek appropriate professional medical advice regarding symptoms, diagnosis, treatment, medications, or other healthcare decisions.