What is EDS and HSD?

Ehlers-Danlos syndromes are considered rare connective tissue and collagen disorders with 14 different sub-types, the majority of which can be diagnosed through genetic testing. All types have a genetic mutation. The Hypermobility type of EDS (HEDS) is the only type that has not yet been traced to a specific genetic mutation and requires a clinical diagnosis based on specific guidelines provided below. For those who do not meet the criteria for HEDS, a diagnosis of Hypermobility Spectrum Disorder (HSD) is used.

Connecting Issues to Connective Tissues

Connective tissues are held together throughout our body using collagen. Since Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) are caused by genetic collagen mutations, it makes sense that any deficits would cause issues wherever there is a break-down in collagen. This is also the reason that symptoms vary widely.
When thinking about EDS, remember:

Collagen holds together connective tissues.
Collagen is found in over 20% of our bodies, including muscles, ligaments, organs, soft tissue and nervous system.
Collagen mutations vary based on the specific gene mutation found in each individual.
All types of Ehlers-Danlos syndromes have symptoms of hypermobility.
Symptoms vary based on where the damage is located for each individual.

Symptoms

As mentioned previously, symptoms vary greatly in intensity and location based on the severity of the condition and type of genetic mutation. However, hypermobility occurs in all patients with Ehlers-Danlos syndromes and Hypermobility Spectrum disorders to some extent. A list of common symptoms are listed below:

Common symptoms

Joint instability, subluxations, dislocations.
Joint deterioration/disease (arthritis).
Soft tissue injury, such as sprains and tears
Skin tearing, stretching, scarring, slow healing.
Chronic pain, inflammation and fatigue associated with everything above.

Comorbidities

There are a variety of comorbidity conditions that are commonly found in EDS and HSD patients. There are a many hypothesis' about why this occurs, but for now, it is important to be aware of these issues and seek specialized care when necessary.

Dysautonomia: Orthostatic Intolerances, Irregular Heart Rate,
Brain Fog, Migraines, Syncope.

Mast Cell Activation Syndrome (MCAS), Histamine Intolerances, Allergies and Sensitivities (Gluten, Dairy, Nuts)

Gastrointestinal Issues such as Irritable Bowel Syndrome and Gastroparesis

Autoimimmune Conditions such as Lupus, Rheumatoid Arthritis, Psoriasis and more.

Diagnosis

Most patients wait for more than 10 years to be diagnosed with Ehlers-Danlos syndromes.This is partially due to the lack of curriculum and training in medical school. Additionally, medical professionals are trained to look for the most common conditions and Ehlers-Danlos syndromes are considered rare conditions. While some types of Ehlers-Danlos syndromes are indeed rare, many research experts are beginning to predict that Hypermobility Ehlers Danlos Syndrome and Hypermobility Spectrum disorders are more prevalent than previously estimated. In fact, a recent study in Wales found Hypermobility diagnosis’ to occur as frequently as 1 in 500 within their patient database. This has led many to believe that EDS and HSD are not rare, but most likely, rarely diagnosed. In order to address the lack of medical professionals’ awareness of EDS, the Ehlers-Danlos Society has provided the free diagnostic resources listed here. Additionally, they provide low/no cost education through their Ehlers-Danlos syndromes Echo program.
If you or a loved one are suffering from this condition, please feel free to share these resources with your care team.

Diagnosed with EDS or HSD?

Many Ehlers-Danlos syndrome patients wait years to receive a diagnosis, only to be disappointed to find that there is no cure for this condition. While medical professionals specializing in Ehlers-Danlos syndromes can help treat symptoms through a variety of prescriptions and protocols, patients may find that they can also benefit significantly by implementing simple lifestyle changes and/or leveraging products and tools that have proven beneficial for other EDS patients.

Interested in Supporting our Cause?

The mission of EDS Louisiana, Inc. is to provide support and resources to Louisiana patients and medical professionals about Ehlers-Danlos syndromes and related conditions via awareness and education. If you would like to support us in this effort, you can do so by volunteering, donations, and by liking and sharing our Facebook and Instagram social media posts and pages. We appreciate your support, however you choose to contribute. Simply select one or more of the links below to get started.

Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders: Hiding in Plain Sight