Living with Ehlers-Danlos syndrome can feel overwhelming. Between medical appointments, medications, therapies, symptoms, and specialist referrals, managing your health can begin to feel like a full-time job.
Perhaps you or someone you love has recently been diagnosed with EDS. Maybe you are still searching for an explanation for symptoms that have never seemed to fit neatly together.
I understand that journey personally. My children and I have hypermobile Ehlers-Danlos syndrome, or hEDS. Like many families affected by EDS, we have had to learn how to manage numerous symptoms, health-care providers, treatments, and medical records.
My hope is that this article will help you better understand EDS and point you toward reliable information and support.
Connective tissue provides support and structure throughout the body. It is found in the joints, skin, blood vessels, muscles, organs, and many other areas. When connective tissue does not function as it should, the effects can be widespread.
Although EDS is often associated with being unusually flexible or “double-jointed,” joint hypermobility is only one part of the condition.
Depending on the type of EDS and the individual, symptoms can range from relatively mild to significantly disabling.
Ehlers-Danlos syndrome is not one single disorder. The current international classification recognizes 13 types of EDS, each with its own features, diagnostic criteria, inheritance pattern, and possible complications.
The 13 types are:
Hypermobile EDS, or hEDS
Classical EDS, or cEDS
Vascular EDS, or vEDS
Classical-like EDS, or clEDS
Cardiac-valvular EDS, or cvEDS
Arthrochalasia EDS, or aEDS
Dermatosparaxis EDS, or dEDS
Kyphoscoliotic EDS, or kEDS
Brittle cornea syndrome, or BCS
Spondylodysplastic EDS, or spEDS
Musculocontractural EDS, or mcEDS
Myopathic EDS, or mEDS
Periodontal EDS, or pEDS
Hypermobile EDS is the most common type. It is generally associated with generalized joint hypermobility, joint instability, chronic pain, and other symptoms that may affect several areas of the body.
Classical EDS is often associated with joint hypermobility, unusually stretchy or fragile skin, easy bruising, and distinctive scarring.
Vascular EDS is a rarer form involving fragility of the arteries and certain internal organs. It requires specialized medical care and monitoring.
The other types are much less common and may involve distinctive concerns affecting the eyes, heart valves, spine, muscles, gums, bones, skin, or joints.
Genetic testing is available for the other recognized types of EDS, but there is currently no genetic test that confirms hEDS. Hypermobile EDS is diagnosed through clinical assessment, medical and family history, established criteria, and the exclusion of other possible conditions.
No two people with EDS experience it in exactly the same way. However, symptoms may include:
Joint hypermobility
Joint instability
Frequent sprains
Subluxations or dislocations
Chronic joint or muscle pain
Muscle fatigue
Easy bruising
Soft, fragile, or unusually stretchy skin
Slow or unusual wound healing
Chronic fatigue
Headaches or migraines
Digestive problems
Pelvic floor dysfunction
Bladder concerns
Poor balance or coordination
Brain fog and memory difficulties
Some people experience only a few of these concerns, while others manage symptoms affecting many areas of the body.
People with EDS may also experience other conditions or groups of symptoms, including:
Dysautonomia, including postural orthostatic tachycardia syndrome
Gastrointestinal problems
Mast cell-related symptoms
Chronic fatigue
Migraines
Sleep difficulties
Pelvic floor problems
Temporomandibular joint disorders
Scoliosis
Anxiety or depression related to chronic illness
Not everyone with EDS will have these conditions. Having one of them also does not necessarily mean that a person has EDS. Each concern should be assessed by an appropriate health-care professional.
EDS can be difficult to recognize because symptoms often affect several different parts of the body.
A person may see a physiotherapist for unstable joints, a gastroenterologist for digestive concerns, a cardiologist for dizziness, and a neurologist for headaches. When each issue is considered separately, the larger pattern can be missed.
Some people spend years searching for answers or are told that their symptoms are unrelated. Others receive diagnoses that explain part of their experience but not the entire picture.
Receiving an EDS diagnosis can be validating, but it may also bring grief, uncertainty, and many new questions.
There is no single treatment for EDS. Management is usually based on each person’s symptoms, needs, and specific type of EDS.
Care may involve:
Physiotherapy focused on stability and safe strengthening
Occupational therapy
Pain management
Braces or splints
Mobility aids
Pacing and fatigue management
Treatment for digestive, bladder, cardiovascular, or neurological symptoms
School or workplace accommodations
Regular medical monitoring where appropriate
Because EDS affects people differently, treatment should be individualized. An exercise, brace, or treatment that helps one person may not be appropriate for someone else.
One part of living with EDS that is not discussed enough is the amount of information a person may be expected to manage.
There can be:
Appointments with multiple specialists
Medication lists
Bloodwork and imaging results
Physiotherapy exercises
Genetic information
Braces and mobility equipment
Symptom changes
Insurance paperwork
Disability applications
School or workplace accommodations
When you are already living with pain, poor sleep, fatigue, or brain fog, remembering all those details can feel impossible.
Keeping your medical information organized can make it easier to prepare for appointments, explain your health history, track symptoms, remember previous treatments, and communicate with health-care professionals.
It can also help when applying for disability benefits or requesting support at school or work.
My own experience with EDS showed me how difficult it can be to keep track of everything in your head.
That is why I created My (Dis)Ability Organizer: The Bendy Edition.
It is a 90-page printable organizer designed to help people living with EDS keep important information together in one place, including:
Appointments
Medications
Symptoms
Tests and procedures
Therapies
Dislocations and subluxations
Splints and braces
Dysautonomia
Mast cell activation syndrome
Scoliosis
Other health concerns
Being organized cannot remove the challenges of living with EDS, but it can make the administrative side of managing a complex condition feel more manageable.
Living with EDS can be isolating, especially when symptoms are misunderstood or invisible to others.
Whether you have recently received a diagnosis, are still looking for answers, or have lived with EDS for many years, there are organizations, health-care professionals, and communities working to improve education, research, support, and care.
I have included several trusted organizations and resources below to help you continue learning and find reliable information.
The Ehlers-Danlos Society – International education, research, and support.
EDS Canada Foundation – Canadian education, advocacy, and support.
GoodHope EDS Clinic (Toronto) – Canadian multidisciplinary clinic specializing in EDS and hypermobility.
MedlinePlus – Reliable, easy-to-understand medical information.
GeneReviews – In-depth medical reference used by health-care professionals.
This article is provided for general education and information only. It is not medical advice and is not intended to replace assessment, diagnosis, or treatment from a qualified health-care professional.