I was born with Ehlers‑Danlos syndrome, but I didn’t know it for decades. I’m sharing this in case it helps someone else who is struggling without answers. Diagnosis can be slow, and many people live for years without understanding why their bodies behave the way they do.

I’m not a medical professional, and this page is based on personal experience and publicly available information. If you recognise several of these symptoms in yourself, it may be worth speaking to a GP or a specialist who understands EDS.

The Ehlers‑Danlos syndromes (EDS) are a group of genetic conditions that affect the body’s connective tissue, which is the material that supports and holds everything in place. In EDS, a gene mutation makes this tissue more fragile and stretchy than it should be. Some people have visibly stretchy skin or very flexible joints, but most symptoms are hidden.

Because collagen is everywhere in the body, EDS can affect many systems at once. Symptoms vary widely from person to person, even within the same family. For many people, it is an invisible disability.

Additional symptoms seen in Ehlers‑Danlos syndrome

People with EDS may experience a wide range of symptoms. Not everyone has all of them, and severity varies even within the same family. These examples come from my own family’s experience and from commonly reported features.

Musculoskeletal and joint symptoms

Joint instability
Hyperextension
Frequent sprains, strains, subluxations, and dislocations
Chronic pain
Muscle stiffness and tightness
Flat feet or fallen arches
Foot and ankle disorders
Scoliosis
Low bone density
Chronic neck strain

Skin and connective tissue

Easily bruising
Abnormal scarring
Bluish sclera (blue‑tinted whites of the eyes)
Nails with deep ridges in middle age

Cardiovascular and autonomic symptoms

Cardiovascular problems
Autonomic dysfunction (dizziness, fainting, palpitations)

Gastrointestinal symptoms

Acid reflux
Gastrointestinal dysfunction (bloating, IBS‑like symptoms, slow digestion)

Dental, facial, and structural features

Small mouth
Narrow lips
Teeth overcrowding

Bladder and pelvic symptoms

Bladder issues (frequent urination, urgency)
Needing catheterisation to empty the bladder
Gynaecological and obstetric problems

Neurological and proprioceptive symptoms

Poor proprioception (difficulty knowing where your body is in space)
Headaches or neck‑related symptoms

Immune and allergy‑related symptoms

Allergies
Mast cell abnormalities

Pain and fatigue

Chronic fatigue
Fibromyalgia‑like symptoms

Mental health (often secondary to years of unmanaged symptoms)

Anxiety
Phobic states
Depression

Anaesthetic issues

Local anaesthetic sometimes not working properly (e.g., at the dentist)

This is only a small sample of the symptoms associated with EDS. If several of these sound familiar, it may be worth exploring further. If you recognise several of these symptoms in yourself, it may be worth speaking to a GP or a specialist who understands EDS.

For detailed information about all types of EDS, diagnosis, and how to approach your GP, please visit EDS UK: https://www.ehlers-danlos.org/