hEDS Up!
A holistic approach to life with hEDS through the experiences of Dr. Hollie Robichaud; hEDS Patient, Doctorate of Nursing Practice, and Holistic Practitioner
All Zebras Welcome
A holistic approach to life with hEDS through the experiences of Dr. Hollie Robichaud; hEDS Patient, Doctorate of Nursing Practice, and Holistic Practitioner
All Zebras Welcome
Please continue to be flexible while the site is updated
(See what I did there?)
According to The Ehlers-Danlos Society, Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body. It is the most common type of EDS, accounting for about 90% of EDS cases and is currently classified as a rare disorder. Only approximately 1 in 3,100–5,000 people are diagnosed. However, the true prevalence of hEDS is not known and may be underestimated due to lack of awareness and education.
hEDS may be suspected if a person has:
Joint hypermobility
Joint instability
Chronic pain
Mild skin hyperextensibility
Abnormal scarring
People with hEDS may also have:
Chronic fatigue
Gastrointestinal issues
Dysautonomia
Headaches
Mast cell activation diseases
There is currently no laboratory test available to diagnose hEDS. The diagnosis of hEDS is given to adults who meet the clinical diagnostic criteria for hEDS. Children and adolescents with generalized joint hypermobility can be assessed using the pediatric diagnostic framework.
hEDS and HSD are typically discussed together under a sort of hypermobility disorder umbrella. HSD is defined as _.
Getting diagnosed with hEDS is usually done by a geneticist despite the lack of genetic mutation able to be tested for pathologic diagnosis. Instead, a clinical diagnosis is made using a variety of assessment tools and diagnostic criteria.
2017 Classification Guidelines
Here it comes...brace yourself...I have to say it...it has to be said: there is no cure for hEDS. There is, however, a slew of symptomatic treatment and lifestyle habits available for treatment and support. Physical therapy, occupational therapy, osteomanipulation, Pilates, anti-inflammatory diet and proper weight management
Having support physically is certainly covered in many care plans for persons with hEDS. However, what I find lacking is organizational support. Yes, hEDS is often included in the pain management specialty which often offer group level support. Unfortunately, many practitioners miss the opportunity to highlight the importance of mental, emotional, and energetic support. The term "holistic" is defined as the belief that the parts of something are interconnected and can be explained only by reference to the whole. In reference to medical care, "holistic" is defined as the treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of an illness (Oxford Languages). Holistic care is therefore care that encompases the entire being. Multifaceted, patient-centric care is a mainstay of success for hEDS patients. Our symptoms are not limited to one specialty, one treatment, one remedy. Therefore, to me at least, it only makes sense to approach care from a holistic perspective.