Ehlers-Danlos syndrome

I was born with Ehlers-Danlos syndrome, but I didn’t know it for decades. This page is here in the hope of helping someone else who is struggling but doesn’t know why.

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place, and providing support, like the mortar between bricks.

In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS, but usually a form of collagen to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual. This is known as being hypermobile, bendy, or double-jointed.

As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once; despite this, EDS is often an invisible disability.

Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations, and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.

information taken from: https://www.ehlers-danlos.org/

This genetic condition is often linked with neurodiversities such as autism, dyscalculia, Dyslexia, ADHD, dyspraxia, dysgraphia, and Developmental Language Disorder, among others.

Other symptoms:

I do not have all of these symptoms, but within my family, together we have most of them. Some of them are rather strange.

Cardiovascular problems, small mouth, narrow lips, and teeth overcrowding, acid reflux, fybromyalgia, foot and ankle disorders, gynecological and obstetric problems, chronic fatigue, abnormal scarring, issues with local anesthetic pain relief not working eg. at the dentist, chronic pain, musculoskeletal problems, bladder issues, e.g., frequent visits to the loo, needing catheterisation to empty the bladder, anxiety, phobic states depression, flat feet/ fallen arches, low bone density, gastronintestinal dysfunction, chronic neck strain, allergies and mast cell abnormalities, TMJ, mustle stiffness and tightness, poor proprioception which is the inability to know where you are in space. Autonomic dysfunction, easily bruising, bluish eslera the whites of your eyes, scoliosis, dural ectasia, joint instability, hyperextension, strains, subluxations, and dislocations. Nails with deep ridges in middle age.

This list is a small sample of the symptoms.

Use the link above to learn more about all the types and how to approach your GP for diagnosis.