What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (Known as EDS) refers to a group of genetic disorders that affect the connective tissue throughout the body. Today we are going to look at what Ehlers-Danlos Syndrome is, and how Bauerfeind products can help manage the symptoms.

This blog was first shared in July 2020, based on community feedback we have updated some details and have published the below follow-up blogs:

• 3 simple ways to manage the symptoms
• EDS: Comorbidity, Mental Health and Life as a Zebra

We will be publishing more in the coming weeks, keep an eye out or follow us on Facebook. 

What is Ehlers-Danlos Syndrome?

There are currently 13 different known types of EDS that affect different parts of the body, ranging in rarity and severity. As a result, the symptoms can vary widely.

Although the symptoms can vary, there are some common symptoms that people with EDS will usually encounter, these include: 

• Joint hypermobility: People with EDS often find that their joints (in particular the knees, hips, elbows, fingers and wrists) extend beyond the normal range of movement. These joints often can also be prone to hyperextension, dislocation and subluxation (partial dislocation). 

• Skin hyperextensibility: EDS often causes the skin to feel soft and velvety which tends to be able to be pulled much further than normal. Often the skin will also be fragile and easily tear or bruise, healing slowly. Heavy scarring is quite common in these cases.

While the symptoms of EDS can also lead to comorbidity (concurrent issues and symptoms that are often related to the original condition) that can have adverse effects on a person’s health and quality of life, these vary greatly from person to person, and the majority of people with EDS aren’t as severely affected.

Research shows that EDS affects at least one in 5,000 people globally, but this is seen as a conservative figure by many, and new studies have shown the condition it to be more prevalent than first thought.

Men and women are both equally likely to be affected, however, women are more prone as they have separate conditions which aggravate the symptoms of EDS.

How do I know if I’ve got it?

If you have symptoms that lead you to suspect that you have EDS, or someone in your family has it, it’s worth speaking to your GP to get a referral for testing. As EDS is a genetic disorder, you’ll usually be referred to a geneticist who can then run you through the appropriate testing to look for certain genetic indicators.

Depending on your diagnosis after the test, the outlook varies. For most people with  EDS, there’s no distinct effect on your lifespan or general health, with the exception of avoiding certain activities that put your joints and skin at risk like contact sports, BMX or off-road activities that put excess strain on your joints.

However, those who suffer from a less common type of EDS, as well as people who have developed comorbidity, can have adverse health reactions including a multitude of disorders, diminished quality of life and in some cases a shortened life expectancy. This is explored further in our EDS series.

How do I treat it?

While there is no cure for EDS, it can be managed through preventative measures and symptom management. Each person’s case of EDS is highly unique, therefore the treatment is as well. Working with your GP, specialist and other healthcare providers, to set up a general treatment plan is the best thing to do. This can change greatly for each person, and for some people, it may need to be altered over time as symptoms develop and change.

That being said, there are some ways to manage whatever type of EDS you might have. We will again go into this in more detail in a future post, however, a couple of quick simple things that can help are:

• Physical therapy and targeted strengthening.
• Pain management.
• Bracing and supports for weak and hypermobile joints.

Featured above, the Bauerfeind ManuTrain Wrist Support. 

So what now?

EDS is a lifelong condition that presents its challenges to each person who has it, but with the right resources, you can live a fulfilling life and learn to manage the symptoms. The team here at Bauerfeind are passionate about helping people with EDS and other chronic issues.

For assistance selecting the right product for your needs, book a video consultation with a Bauerfeind expert: Book Video Call, or call us on 1300 668 466.

Do you have private health? Most private health extras will cover Bauerfeind Products, check to see if yours is included. Bauerfeind Private Health Insurance Inquiry.

Bauerfeind products are developed at our innovation and manufacturing facility in Zeulenroda, Germany. Based on years of scientific research, our award-winning braces and support garments are highly recommended by medical professionals and athletes worldwide.