Ehlers-Danlos Syndromes

The Ehlers-Danlos syndromes (EDS) are a group of hereditary disorders of connective tissue that are varied in the ways they affect the body and in their genetic causes. The underlying issue is the abnormal structure or function of collagen and certain allied connective tissue proteins.

They are generally characterized by joint hypermobility (joints that move further than normal range), joint instability (subluxation [partial separation of the articulating surfaces of a joint]) and dislocations (full separation of the surfaces of a joint), scoliosis, and other joint deformities, skin hyperextensibility (skin that can be stretched further than normal) and abnormal scarring, and other structural weakness such as hernias and organ prolapse through the pelvic floor. In the rarer types of EDS, there is also weakness of specific tissues that can lead, for example, to major gum and dental disease, eye disease, cardiac valve and aortic root disorders, and life-threatening abdominal organ, uterine, or blood vessel rupture. 

Please visit The Ehlers-Danlos Society, which has an excellent primer on EDS that goes into more detail than is provided here.

EDS PSA

EDS looks different in every individual, and each day may be drastically different from the next. Just because someone looks “healthy” or is “successful” does not mean they aren’t in pain and struggling. Those of us who live with chronic conditions, such as EDS and its comorbidities, are often pros at hiding and pushing through our pain.

Please believe us when we say “I have brain fog,” “I can’t walk that far,” “I can’t sit that long,” “I dislocated my finger putting on my pants,” “I got whiplash from the wind,” “I’m having trouble breathing,” “I’m so bloated it hurts,” “the doctor mocked me,” - or whatever it is that we bravely and vulnerably decide to share with you.

Your response - whether it is filled with or lacking in compassion and empathy - leaves a mark on us, and you have the opportunity to either leave us feeling traumatized and misunderstood or heard and respected.

Signs and Symptoms

Joints

  • Joint pain and deformity

  • Muscle pain

  • Nerve pain

  • Loose/unstable joints

  • Dislocations and/or subluxations and injury

  • Muscle tension and weakness

  • Weakness of the voice box and larynx

  • Hernias

  • Pelvic floor weakness and prolapses of the rectum, bladder, or vaginal wall and uterus

  • Nerve disorders (neuropathy)

  • Chiari

  • Tethered Cord Syndrome

  • Cranio-cervical instability

  • Headaches

  • TMJ

Skin

  • Soft, velvety-like skin

  • Variable skin hyper-extensibility

  • Fragile skin that tears or bruises easily

  • Severe scarring

  • Slow and poor wound healing

  • Development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas)

Gut

  • Slow/poor motility

  • Nausea

  • Bloating

  • Abdominal pain

  • Poor nutrient absorption

Misc.

  • Fatigue

  • Arterial/intestinal/
    uterine fragility or rupture (usually associated with vascular EDS)

  • Scoliosis at birth and scleral fragility (usually associated with Kyphoscoliotic Type of EDS)

  • Congenital hip dislocations

  • Poor muscle tone

  • Gum disease

  • Gum recession

  • Autoimmune dysfunction

  • Convergence insufficiency and other vision challenges

  • Orthostatic intolerance

  • Sensory processing challenges

  • Brain fog

  • ADHD

What EDS Can Look Like in Real Life

Lifestyle

  • Legs twisted like a pretzel, standing on the tops of toes

  • Sleeping can be difficult and painful because muscles are always tensed and constantly attempting to stabilize the body, even at “rest”

  • Shoulders falling forward, causing a cascade of issues, including difficulty breathing

  • Difficulty swallowing, pills getting lodged in throat

  • Difficulty speaking, losing voice

  • Running and banging into objects, door frames, etc.

  • So many bruises from unknown sources

  • Difficulty building muscle tone

  • Fatigue caused/exacerbated by seemingly nothing, and even more so from actual somethings

  • Looking 6 months pregnant after eating or drinking a lot of water

  • Avoiding handwriting because it hurts

  • Wake up —> need to rest —> shower —> need to rest —> brush teeth —> need to rest —> eat breakfast —> need to rest —> etc.

  • Wake up —> push through —> push through —> push through —> crash HARD and pay for it

  • Saying “no” to social plans because of injuries, fatigue, the activity isn’t safe or manageable, or the activity will take up too many spoons (energy)

  • Discomfort wearing clothes; changing clothes multiple times a day to try to find an outfit that doesn’t hurt

Injuries

  • Getting whiplash from the wind

  • Dislocating/subluxing fingers from pulling on pants

  • Getting concussions because of lack of proprioception (sense of where the body is in space)

  • Spine and other joints shifting during sleep

  • Dislocating shoulder from being walked into

  • Rolling ankles, falling randomly

  • Spinal compression from sitting “too long” or walking “too much”

  • Rib subluxations making it harder to breathe

  • Knee cap slipping when walking

  • Rib dislocations from wearing bras

  • Injuring jaw, spine, hips from crying, sneezing, coughing

  • Getting injured carrying bags, backpacks, groceries, shopping bags, luggage, etc.

  • Eating chewy foods (i.e., nuts, bagel, tough meat, etc.) causing jaw to become jammed or to dislocate/subluxate

Co-Morbidities

Neurological

  • Dysautonomia

    • Postural Orthostatic Tachycardia Syndrome (POTS)

  • Peripheral Neuropathy

Gastroenterological

  • Gastroparesis

  • Small Bowel Dysmotility

  • Median Arcuate Ligament Syndrome (MALS)

  • Irritable Bowel Syndrome

  • Small Intestinal Bacterial Overgrowth (SIBO)

  • Small Intestinal Fungal Overgrowth (SIFO)

Allergy-Immunological

  • Mast Cell Diseases

    • Mast Cell Activation Syndrome

    • Hereditary alpha Tryptasemia

    • Mastocytosis

Miscellaneous

  • Chronic Fatigue Syndrome

  • Osteopenia, Osteoporosis

  • Infection

  • Chiari

  • Tethered Cord Syndrome

  • Convergence insufficiency

  • Sensory Processing Disorder

  • ADHD

Care Team

Click here for a list of recommended practitioners

Primary Care

  • Primary/Family Care Physician

  • Pediatrician

  • Functional/Integrative Medicine Physician

Mind-Body Medicine

  • Psychologist, Psychiatrist

  • Hypnosis Practitioner (with MD, DO, or PhD)

  • Functional/Integrative/Naturopathic Medicine Physician

Physician Specialists

  • Gastroenterologist

  • Allergist-Immunologist

  • Neurologist

  • Cardiologist

  • Rheumatologist

  • Dermatologist

  • Pain Management Specialist

  • Optometrist

  • Ophthalmologist

  • Otolaryngologist (ENT)

  • Dentist

  • Periodontist

  • Orthodontist

  • Environmental Medicine Specialist

  • Neurosurgeon

Pain Management and Restoring Function, Bodywork, Movement Specialist

  • Osteopathic Manipulation Specialist

  • Physical Therapist (Integrative Manual Therapy, dry needling, pelvic floor, vestibular, visceral, etc.)

  • Physiatrist

  • Chiropractor

  • Occupational Therapist

  • Alexander Technique Practitioner

  • Feldenkrais Practitioner

  • Massage Therapist

  • Neuro Performance Specialist

  • Dynamic Neural Retraining Specialist

  • Acupuncturist

  • Orofacial Myofunctional Therapist

Miscellaneous

  • Speech Therapist

  • Voice Coach

  • Nutritionist, dietician

Management

When living with chronic conditions that require a lot of medical care, it can be hard to feel like we’re in control of our bodies and lives. But with intention, we can take back much of that power, live more independently, and feel in charge of our lives again. Below are some tips on managing EDS at home. Stay tuned for blog posts that will provide details about how to use these resources.

Tips & Tricks

  • Schedule appointments with your physical therapist/osteopath/chiropractor for right after medical tests, such as colonoscopies, endoscopies, mammograms, MRIs, CT scans, etc. These tests can throw off our alignment and cause injuries, and planning ahead to make sure our tests are followed soon after by bodywork and realignment can make an enormous difference in comfort and recovery.