What is EDS?

If a tree falls in a forest, does it make a sound?

I've decided to write all this down... to keep all my thoughts in one place, here, so that other people – people like me - might someday find it. Maybe this will be a useful journal for others, maybe I can impart some knowledge, or maybe this journal will fall on deaf ears in the abyss of the internet, like the tree in the empty forest. So here goes:

Hi! My name is Jessie, and I have Ehlers-Danlos Syndrome: Hypermobility type. EDS3 or EDS-HM or HEDS for short. Yeah, it's a mouthful.

I must have read a million blog posts that start that way now, because like most people with EDS, I'm on a constant quest to consume all the knowledge I can about it. It's so misunderstood by the medical profession that Professor Rodney Grahame remarked to me that EDS patients are often better experts than the medical practitioners they encounter. There's a big online community of EDSers out there, and for good reason: we make up a surprisingly large proportion of society, with 1 in 5000 affected by this particular heritable connective tissue disorder (HCTD or HDCT).

We are also such an active online community because we are so engaged with our own self-help and health care. With the medical community allowing it to go unrecognised and under-medicalised, telling EDSers that we're hypochondriacs, imagining our condition, or making it up, we end up turning to one another to seek advice. We take charge of our invisible illness, because we've so often been failed by the 'professionals'.

I say 'we' with such broad brushstrokes because in every single personal story I've ever read, I've yet to find one that tells of a smooth, bumpless road towards a swift diagnosis. On the contrary, it's a long, arduous, exhausting mess... not even a road at all. It's a dense forest in the wilderness with no way-finders. You stumble, blind, trying to find your way out of that forest, never able to see the wood for the trees.Sound familiar? If you've got an invisible illness, you'll know the exasperation well.
So what is EDS? If you're here reading this, you'll probably know the answer to that already, and there are many lists of EDS symptoms out there on the internet (don't read the Wikipedia one – it's incomplete and a bit of a let down).

The most important thing I can tell you in terms of defining EDS is that it occurs due to a genetic mutation in the connective tissues. I've heard it said that our 'blueprint' for collagen is faulty, which is why there is no cure for EDS, and no supplement that can help EDSers... no matter what building blocks we provide our bodies with, we will never be able to make collagen the same way that the majority of the population can. Normal, healthy collagen is robust, strong. In EDSers, the collagen is fragile, and vulnerable. Think of us as an old, overstretched rubber band at the back of your desk drawer, while the rest of the population are fresh out of the box.

Instead of giving you a complete diagnostic list (HMSA, EDNF, and EDS Awareness have great resources for that information) I'll list the symptoms of EDS-HM that I experience. Each EDSer is different, and presents in different levels of severity for a number of different reasons, so take this list for what it is: a laundry list of my personal experience of EDS.

Musculoskeletal

• Hypermobility of joints in most joints of my body

• Subluxations in ankles, wrists, shoulders, knees, cervical spine, SI/hips and jaw (regularly)

• Dislocations in jaw, knee, ankle, shoulder (less regularly)

• Disc degeneration in my spine from the age of 15

• Crepitus (chronic spontaneous cracking of the joints)

• Arthralgia (joint pain)

• Myalgia (muscle pain) and myofascial pain

• Susceptibility to bursitis

Skin

• Poor wound healing

• Spontaneous bleeding

• Easy bruising

• Hyper extensibility

• Velvety, doughy texture

• Translucent, can see veins all over my body

• Lots of stretch marks (including in places people don't usually get stretch marks!)

• Atrophic scarring

Gastrointestinal

• GERD

• IBS

• GI dysmotility

• Early satiety

Dysautonomia

• Postural Orthostatic Tachycardia Syndrome (PoTS)

• Inability to regulate body temperature

• One sided sweating

• Raynaud's Phenomenon

• Blepharitis (dry eyes)

• Brain fog

This list might not be exhaustive, mostly because of that pesky last symptom: Brain fog!Some of my skin symptoms suggest overlap with Classical EDS (formerly types I and II), and there is a genetic test for this that I can't afford to have done. The outcome of that test is purely academic, as the 'treatment' remains the same.

Jessie x