Ehlers-Danlos Syndrome (EDS) – another approach when surgeries and medications aren’t helping

Rising (Le Lever) (1909) by Pierre-Auguste Renoir. Original from Barnes Foundation. Digitally enhanced by rawpixel.

What is EDS? Ehlers-Danlos Syndrome is “a group of inherited disorders that mostly affect the skin, joints, blood vessels and connective tissue. It is seen through symptoms like overly flexible joints that can dislocate, or skin that’s translucent, elastic and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels. Treatment helps manage symptoms and monitor for complications. Traditional options for treatment include drugs, physiotherapy and sometimes surgery.”

What it is for “Laura” (not her real name) is hard-work. She aligns with 4—5 of the 13 diagnosable variants. She was happy for me to share some of her story here, so others may gain understanding and/or seek treatment.

“Laura” was only diagnosed with this in her 40’s by a dermatologist and it’s never been formally tested. She thought something must have happened in her mother’s first trimester, as everything in her body seemed faulty.

She struggles with low blood pressure and severe allergies and literally split herself apart with her two children: She has had her vagina reconstructed of the vagina and her bowel and bladder pinned back into place a hysterectomy, gall bladder removal, a hiatus hernia on top of other repeated hernia’s. She has an angry wound from a mozzie bite which is 8 months old. Sometimes she can wake in the morning, stand up and realise that her bladder is now going to be trapped in an uncomfortable position for the rest of the day. But even with all this, she is hugely positive and manages her condition extremely well and proactively. Her stomach may start compressing her lungs, impacting her breathing while she’s doing yoga but she just pokes and prods parts of herself back into place when they pop out.

Our first session together was amazing. Laura’s body really responded well to the touch and presence of a “neutral listener”. Areas of “stickiness” softened, over-heated areas cooled and we both felt shifts in her body that related to some of the traumatic experiences her body had gone through.

The whole structure of the body seemed to be “seeing” itself in many different parts and ways and areas where Laura perceived long held stuckness and blockages opened to
allow shifting and reorganization. Compressed areas shifted and made space for themselves and tense areas softened while low vitality tides in the body gained potency.

When I began at her feet, Laura’s system felt like it housed untethered floating globules rather than presenting as a longditudinal wrapping of fascia and connective tissue we
normally expect to feel. By the time I got up to the cranial base her system was responding keenly, working to readjust itself for greater comfort and cohesion in very tangible ways.
She reporting feeling things she hadn’t felt since a teenager. ‘I just felt a hunger pang. I haven’t had one of those since I was a teenager.’

I love this work.

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