Well-Being Hypermobility & EDS Care

06/10/2025

We are passionate about spreading awareness to other medical providers!
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The June Course of the Month is now available! Presented by Dr. Sueanne Baddour, this course explores hypermobility and hereditary connective tissue disorders and how to approach the clinical diagnostic process for hypermobile Ehlers-Danlos syndrome and hypermobile spectrum disorders. Learn more: bit.ly/aanp-june-25.

05/07/2025

May is Ehlers-Danlos Syndrome (EDS) Awareness Month, a time to shine a light on this often misunderstood condition. EDS affects connective tissues, leading to symptoms such as joint hypermobility, chronic pain, and fatigue, impacting daily life for many individuals.

At our practice, we are dedicated to diagnosing and managing EDS and related conditions, addressing symptoms like joint hypermobility, pain, fatigue, dysautonomia, and more. If you or a loved one suspect hypermobility or an EDS diagnosis, we’re here to guide you on your journey to better health and improved quality of life. Let’s spread awareness and compassion together this May.

11/12/2024

More great progress here. Great that our current clinical diagnostic criteria holds up to truly capturing those that have hEDS instead of other hereditary connective tissue disorders HCTD). They state that less than 1% actually had another CTD.
Also very interesting that some 'common' genes are found in both those with hEDS and those with hypermobility but without EDS!

10/01/2024

Highlight on dysautonomia, which is present to some extent in most individuals that also have a hypermobility syndrome!

October is Dysautonomia Awareness Month. Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.⁠
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Many people with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) also have a type of dysautonomia. There are different types of dysautonomia with different symptoms. ⁠
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People with EDS and HSD most commonly have a form of orthostatic intolerance. “Orthostasis” means to stand upright, so orthostatic intolerance refers to symptoms that occur due to standing up or being upright.⁠
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The two most common types of orthostatic intolerance are:⁠
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1️⃣ Orthostatic hypotension (OH) — low blood pressure on being upright.⁠
2️⃣ Postural orthostatic tachycardia syndrome (POTS) — an abnormal increase in heart rate when standing without a drop in blood pressure.⁠
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Symptoms of dysautonomia include: ⁠ ⁠
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● Tachycardia (fast heart rate)⁠ ⁠
⁠● Palpitations (feeling the heart racing or pounding)⁠
● Hypotension (low blood pressure)⁠
● Lightheadedness ⁠
● Presyncope (a sense of being about to faint)⁠
● Syncope (fainting)⁠
● ⁠Blurred vision⁠
😶‍🌫️Brain fog (problems with concentration and memory)⁠
● Headaches⁠
⁠● Chest pain ⁠ ⁠
⁠● Shakiness⁠
💤Chronic fatigue⁠
⁠● Exercise intolerance and feeling worse after exercise⁠ ⁠
● Swelling and/or discoloration of the legs after standing for short periods of time⁠
● Cold, discolored hands and feet⁠ ⁠
⁠● Temperature dysregulation⁠ ⁠
🥵Sweating⁠
● Sleep disturbance⁠
● Gastrointestinal issues⁠
● Nausea⁠
🚽Bladder dysfunction⁠
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Stay with us throughout October as we talk more about dysautonomia, how it's diagnosed, and management. In the meantime you can learn more about diagnosis and management here: https://www.ehlers-danlos.com/dysautonomia/

09/14/2024

This is amazing- new discoveries happening and getting closer 🧬 🦓 🧬
Clinically, HSD and hEDS are currently indistinguishable and managed similarly.

📢New Research Identifies Potential Biomarkers for Diagnosing Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)!

🩸A recent study funded by The Ehlers-Danlos Society, and published in the American Journal of Medical Genetics, has identified potential blood-based biomarkers that could help diagnose hEDS and HSD.

❗This discovery is significant because diagnosing hEDS and HSD has been challenging due to the lack of established laboratory tests and molecular markers.

What was the study, and what did it find❓

🔬In this study, researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD.

1. The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis.

2. The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology, thus questioning the differentiation between these conditions.

3. Additionally, a fragment of collagen I was found in all individuals with hEDS and HSD, although this fragment was also present in other conditions.

What could this study mean❓

The identification of these fragments could lead to the development of the first blood test for hEDS and HSD, providing a more reliable diagnostic tool for healthcare providers, and reducing the time to diagnosis, which currently averages around 12 years.

What are the next steps❓

The study's findings are a significant step forward, but the authors emphasize that before this test is ready for diagnostic use, other investigators must confirm the results in additional cohorts of hEDS, HSD, and controls.

The Ehlers-Danlos Society is sponsoring further confirmatory work. Currently, no diagnostic lab offers this test, but if validated, it could become an important tool in diagnosis and treatment trials and provide new insights into the underlying causes of hEDS and HSD. Of course, we will keep you up to date with all developments!

Find an FAQ and further information, including a link to the research paper here: https://www.ehlers-danlos.com/new-research-identifies-potential-biomarkers-for-diagnosing-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/

05/07/2024

🦓 May is Ehlers-Danlos/Hypermobility Spectrum Awareness Month, highlighting the importance of raising awareness about these unique connective tissue disorders.

What are the types of EDS?

The current classification includes 13 types of Ehlers-Danlos syndrome (EDS).

Each type of EDS has its own set of features with distinct diagnostic criteria. Some features are seen across all types of EDS, including joint hypermobility, skin hyperextensibility, and tissue fragility.

🧬Arthrochalasia EDS (aEDS)⁠
🧬Brittle Cornea Syndrome (BCS)⁠
🧬Cardiac-valvular EDS (cvEDS)⁠
🧬Classical EDS (cEDS)⁠
🧬Classical-like EDS (clEDS)⁠
🧬Dermatosparaxis EDS (dEDS)⁠
🧬Hypermobile EDS (hEDS)⁠
🧬Kyphoscoliotic EDS (kEDS)⁠
🧬Musculocontractural EDS (mcEDS)⁠
🧬Myopathic EDS (mEDS)⁠
🧬Periodontal EDS (pEDS)⁠
🧬Spondylodysplastic EDS (spEDS)⁠
🧬Vascular Ehlers-Danlos Syndrome (vEDS)⁠
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Each type of EDS is caused by variants in specific genes that provide the instructions for making collagens and related proteins. Some types of EDS are associated with multiple different genes. The genetic cause(s) of hEDS have not been identified.

Learn more about the associated gene(s), affected protein(s), and distinguishing features of each type of EDS here: https://www.ehlers-danlos.com/what-is-eds/

02/25/2024

This is Eating Disorders Awareness Week

Individuals with Ehlers-Danlos Syndrome, a condition that causes hypermobility, may have an increased risk of developing Avoidant/Restrictive Food Intake Disorder (ARFID). Understanding these connections can help promote holistic care and support for those affected.
Here is a video from National Eating Disorders Association that explains more:

In this video, Kamryn Eddy, PhD discusses signs and symptoms of Avoidant Restrictive Food Intake Disorder (ARFID), its health consequences, and its treatment...

01/30/2024

Hypermobility is a condition in which joints can move beyond the normal range. It's commonly seen in people with connective tissue disorders like Ehlers-Danlos syndrome. This extended range of motion can lead to injury and pain. It is important to recognize hypermobility and learn safe joint movement and motion.

01/27/2024

Fatigue is a common and often underestimated symptom of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), significantly affecting a person’s quality of life.

There are many causes of fatigue in EDS and HSD, including:

● Chronic pain
● Deconditioning
● Dysautonomia
● Bladder and bowel dysfunction
● Mental health
● Nutritional deficiencies
● Medications

Any one of these factors alone can cause fatigue. More than one is often present, and each tends to aggravate the others. For example, chronic pain can make it difficult to exercise, which can lead to deconditioning. Deconditioning can worsen depression when people cannot do the activities that they used to be able to do.

Learn more about how fatigue is managed here: https://www.ehlers-danlos.com/fatigue/

Find the 2023 EDS ECHO Summit: Fatigue, Causes, and Management recordings to watch here: https://www.ehlers-danlos.com/events/fatigue/

01/26/2024

Exciting news! A really sweet children's book on invisible disability and Ehlers-Danlos Syndrome has been released.

Bendy Bones and Stretchy Skin: An Ehlers-Danlos Book

01/24/2024

Ehlers-Danlos syndrome affects connective tissues, leading to hypermobility and joint pain, as well as other symptoms such as brain fog. If you experience any these symptoms, consult with a medical professional for a proper diagnosis and management plan.

ONE-Brain fog is a common symptom in Ehlers-Danlos Syndrome (EDS). Many patients with EDS often report experiencing cognitive impairment, commonly referred to as "brain fog". This can include memory problems, difficulty ...

01/20/2024

Don’t forget - the EDS Society holds monthly virtual meetups!

Join our wonderful Society team and members of the EDS and HSD community from around the world, for our one hour Let’s Chat: EDS and HSD group. These groups take place around 4 times a month and are a wonderful place to share stories and experiences with others who will understand.