I finally decided to open up about my rare disease and how my Holistic Health Spa was birthed.
By now, you’ve heard that the owner of Hoelle Holistic Health and Spa, Danielle Hoelle has a rare disease that put her in a wheelchair and made her a Zebra for some time. But what is it and why Zebra? Let’s talk about it.
Ehlers Danlos Syndrome (EDS) is genetic condition, meaning people that have it are born with it, with almost all cases having at least 1 parent with the condition.
It is a complex and rare systemic connective tissue disorder characterized by a disruption in several genes that regulate collagen and the extracellular matrix in the body. There are 14 subtypes of EDS, each with similar and different genetic components and symptoms, sometimes overlapping with other types.
What does this mean? This means that people with EDS (also known as EDSers) often have a collagen deficiency or collagen synthesis issue, where the construction of collagen, (and also) fibronectin, and extracellular matrix are incomplete in the body.
Since collagen is the most abundant protein in the body, accounting for nearly 30% of the body’s total protein, it’s critical in wound healing, proper blood flow in blood vessels and organs, laxity in joints, elasticity in the skin, and so much more.
Collagen is the primary building block of the body’s skin, it covers the muscles, makes up some of the bones, tendons and ligaments, and other connective tissues like oral gums and fascia. It’s also found in the organs, blood vessels and intestinal lining.
EDS makes the collagen structures too relaxed, causing weakness and instability, so commonly experienced symptoms are:
– generalized joint hypermobility (knees, hips, fingers, wrists, spine, ankles, you name it)
– frequent joint dislocations
– chronically tight muscles holding loose ligaments in place (especially after injuries like whiplash)
– tissue fragility (skin and blood vessels can tear easy)
– organ fragility (organs can rupture easily)
– Severe Bruising
– Arterial fragility with aneurysm/dissection/rupture
– atrophic scarring
– muscle weakness
and so much more!
EDS often comes with severe co-morbidities like:
– autoimmune conditions such as MCAS (Mast Cell Activation Syndrome) because histamines live in connective tissue and are released in excess with constant microtears in connective tissue from complications of EDS.
– neurological conditions such as POTS (Postural Orthostatic Tachycardia Syndrome) because the vagus nerve is consistently in overdrive from chronic pain, chronic inflammation, fear of the next injury, and the body working so hard to stay in one piece.
– neuro-immunological conditions such as SFN (Small Fiber Neuropathy) which in Danielle’s case was immune mediated by TS-HDS antibody, causing both her autonomic and peripheral nervous system to shut down and put her in a wheelchair.
EDS is difficult to live with and even harder to treat. There actually is no allopathic treatment for the condition or the comorbidities, and because it’s rare, it’s considered “experimental” to the insurance and drug companies. Drug trials often get discarded into the “orphan drug” pile and we never get help.
Additionally, most doctors, chiropractors, physical therapists, and even massage therapists have not been trained in how to treat or manage patients with the symptoms of EDS or generalized joint hypermobility, nor have they ever heard of this condition, as they are trained in extending range of motion – not decreasing it and preventing injuries from joint subluxations.
So, in her search to get her health and her life back, Danielle had no choice but to increase her education in disabilities, complete CEUs in EDS, and take the holistic route.
Among many changes she made, she started receiving massages once a week, hydrotherapy twice a day, shifted her mindset, regulated her nervous system, and found ways to manage her pain without the use of pharmaceutical drugs. She has been able to maintain feeling better for the past 9 months when our spa opened.
Now, Danielle treats patients with EDS, chronic pain, and rare conditions who are looking to follow a similar path of holistic wellness. She offers:
– consulting services to those who are looking for physicians in the area who have even heard of EDS and want to build a care team
– massage therapy sessions for myofascial pain relief and to help regulate the nervous system
– holistic remedies to soothe ailments commonly associated with EDS
– clean and clinical skincare (specifically to increase vitamin c topically which in turn helps collagen in EDSers)
Danielle has tested genetically for dEDS, has familial presentation of vEDS, and has been formally diagnosed with hEDS. (Complicated!)
Why the Zebra?
“People with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often identify themselves as zebras.
Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.
People with rare and chronic diseases spend years searching for answers:
“But you look normal”
“You’re too young to have so many problems”
“You’re too old”
“You can’t have that, it’s too rare”
“No one knows what that is”
The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”
When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical. We have different symptoms, different types, and different experiences—and we are all working towards a time when a medical professional immediately recognizes someone with an Ehlers-Danlos syndrome or HSD, reducing the time to diagnosis, and improving pathways to care.” (EDS Society)
Find her on the Ehlers Danlos Society Directory Page and share with someone you know who may be able to benefit.
Images: Courtesy of EDS Society Website
Hoelle Holistic Health and Spa 
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