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Ever heard of Ehlers Danlos Syndrome? If you’re like most people, you probably haven’t. And yet, this condition is more common than you might think, especially among children and young adults. In fact, up to 15% of kids have hypermobile joints that usually tighten up to a normal range of motion as they get older (1). But for some, their joints don’t tighten with age, leading to a host of painful symptoms as they go through life.
In this blog, we’ll delve into the world of Ehlers Danlos Syndrome (EDS), shedding light on what it is, how it’s caused, and the issues that come along with it. We’ll debunk some myths, clarify some misconceptions, and hopefully leave you with a better understanding of this often misunderstood condition. So, buckle up and let’s dive in, shall we?
What is Ehlers Danlos Syndrome?
Ehlers Danlos Syndrome, in its simplest terms, means your joints are more flexible and have a wider range of motion than normal. It’s like being double-jointed, but on a whole new level. Sounds cool, right? Well, not quite. While this increased flexibility might make you the star of the show in a yoga class, it can also lead to a whole host of problems, especially if your joints don’t tighten up as you age.
But why does this happen? Why do some people’s joints remain flexible while others tighten up? The answer lies in a protein called collagen, the “glue” that holds all our joints and tissues together. When this collagen is affected by inherited genetic defects or injuries, it can lead to Hypermobility Syndrome.
Now, before we go any further, let’s clear up one thing: not all hypermobility is bad. In fact, in most cases, it causes no problems and presents no symptoms. But when it does, it can be quite debilitating, leading to conditions such as EDS and Marfan Syndrome (MFS) (2). So, now that we’ve got a basic understanding of what EDS is, let’s delve a little deeper and look at the causes and issues that come along with it. Ready? Let’s go!
Understanding Ehlers Danlos Syndrome
So, we’ve established that Ehlers Danlos Syndrome is all about having joints that are more flexible than usual. But what does this really mean? And how does it affect those who have it?
Let’s take a closer look.
Imagine your body as a well-oiled machine, with your joints acting as the hinges that allow movement. Now, imagine if those hinges were a little too loose, allowing the machine parts to move more than they should. That’s essentially what happens in Hypermobility Syndrome. The joints, which should ideally move within a certain range, end up moving beyond that range, leading to potential problems.
But why does this happen? Well, the answer lies in our genes. EDS is often caused by inherited genetic defects that affect the body’s production of collagen. Remember how we said collagen is the “glue” that holds our joints and tissues together? Well, when this glue isn’t as strong as it should be, it can lead to joints that are more flexible than normal. In some cases, hypermobility can also be caused by injury. For instance, if a joint is injured and doesn’t heal properly, it can end up being more flexible than it was before the injury.
Now, it’s important to note that not everyone with hypermobile joints will experience problems. In fact, many people with hypermobility lead perfectly normal lives without any issues. However, for some, this increased flexibility can lead to a host of painful symptoms, which we’ll delve into in the next section.
So, there you have it – a deeper understanding of Ehlers Danlos Syndrome. It’s not just about being able to do the splits or bend your fingers in weird ways. It’s a condition that can have a significant impact on a person’s life, especially if it leads to painful symptoms.
Causes of Ehlers Danlos Syndrome
Now that we’ve got a handle on what EDS is, let’s delve into the why. Why do some people have this increased joint flexibility? And why does it cause problems for some but not for others? The answers to these questions lie in the intricate workings of our bodies, specifically in our genes and our collagen.
As we mentioned earlier, one of the main causes of EDS is inherited genetic defects. These defects can affect the body’s production of collagen, the protein that acts as the “glue” holding our joints and tissues together. When this collagen isn’t as strong or as plentiful as it should be, it can lead to joints that are more flexible than normal.
But it’s not just about the genes. Injuries can also play a role in causing Hypermobility Syndrome. If a joint is injured and doesn’t heal properly, it can end up being more flexible than it was before the injury. This is why it’s so important to take care of our bodies and ensure that injuries are properly treated and healed, as this can lead to issues with mobility, and a lot of time spent with a mobility coach.
Now, you might be wondering: if Hypermobility is caused by genetic defects and injuries, why doesn’t everyone with these issues have the syndrome? Well, the answer is that not everyone with hypermobile joints will develop Ehlers Danlos Syndrome. In fact, many people with hypermobile joints lead perfectly normal lives without any issues. However, for some, this increased flexibility can lead to a host of painful symptoms.
And this brings us to the crux of the matter. EDS isn’t just about having flexible joints. It’s about how these joints affect our lives, especially when they lead to painful symptoms. In the next section, we’ll delve into these symptoms and the issues they can cause. So, stick around – there’s still a lot to learn!
Symptoms of Hypermobility Syndrome
Alright, we’ve covered the what and the why of EDS. Now, let’s get into the nitty-gritty: the symptoms. What does it actually feel like to have this condition? And how does it affect daily life? Let’s find out.
First off, it’s important to note that not everyone with hypermobile joints will experience symptoms. In fact, many people with hypermobility lead perfectly normal lives without any issues. However, for those who do experience symptoms, they can be quite varied and, in some cases, quite severe.
One of the most common symptoms of EDS is joint dislocation. This is when a joint moves out of its normal position, causing pain and potentially limiting movement. This can happen in any joint but is most common in the shoulders, knees, and fingers.
Another common symptom is chronic fatigue. This isn’t just feeling tired after a long day; it’s a persistent sense of exhaustion that doesn’t go away with rest. This can make it difficult to carry out daily activities and can significantly impact a person’s quality of life.
Frequent injuries, such as sprains and strains, are also common in people with Hypermobility. This is because their joints are more flexible than normal, making them more prone to injury.
Digestive issues, such as irritable bowel syndrome (IBS), can also occur in people with Ehlers Danlos Syndrome. This is because the body’s connective tissues, which include the tissues in the digestive system, can be affected by the condition.
Some people with EDS may also have thin and fragile skin that bruises easily. This is due to the collagen abnormalities that are often present in the condition. Other symptoms can include scoliosis (a curvature of the spine), poor balance and coordination, and even heart problems in some cases.
As you can see, Ehlers Danlos Syndrome can have a significant impact on a person’s life. But it’s not all doom and gloom. With the right Hypermobility rehab programme, people with EDS can lead healthy, fulfilling lives. So, if you or someone you know is dealing with this condition, don’t lose hope. There are ways to manage these symptoms and live a full and active life. Stay tuned for our next blog where we’ll delve into these strategies in more detail. Until then, take care!
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Ehlers Danlos Syndrome (EDS) is a group of inherited connective tissue disorders caused by defects in collagen production or structure. These genetic conditions affect the body’s connective tissue that holds joints, skin, and internal organs together. it isn’t that they produce less collagen, but that the collagen is defective. EDS is characterized by hypermobile joints, skin hyperextensibility, and tissue fragility, with severity varying among the different types. Often
Ehlers-Danlos Syndrome (EDS) symptoms vary by type, but the most common include joint hypermobility, chronic pain, frequent joint subluxations or dislocations, stretchy or fragile skin, and slow wound healing. Many people also experience fatigue, digestive issues, and autonomic dysfunction (such as dizziness or fainting upon standing).
EDS causes joint laxity due to weakened connective tissue, making joints prone to instability, frequent dislocations, and chronic pain. Over time, this can lead to early-onset arthritis, muscle imbalances, and difficulty maintaining posture.
Yes, chronic pain and fatigue are hallmark symptoms of EDS. Pain may come from joint instability, muscle overuse (due to compensating for weak joints), or nerve-related issues. Fatigue is common due to the body working harder to stabilize itself and possible underlying autonomic dysfunction (like POTS).
People with EDS often have soft, velvety, and hyperelastic (stretchy) skin that bruises easily and heals slowly. Some may develop atrophic scars, which appear thin and papery. Skin fragility varies by type—for example, vascular EDSsignificantly increases the risk of blood vessel rupture and fragile skin tearing.
Yes, many people with EDS experience gastrointestinal issues such as IBS-like symptoms, slow digestion, acid reflux (GERD), bloating, and constipation. In more severe cases, certain types of EDS can cause organ prolapse or rupture.
Yes. Studies show a strong link between EDS and anxiety disorders, particularly due to heightened adrenaline responses, chronic pain, and instability in the nervous system. Many people also experience depression due to the chronic nature of symptoms and lack of awareness among healthcare providers (3),(4),(5).
References:
- Clinch, J., Deere, K., Sayers, A., Palmer, S., Riddoch, C., Tobias, J.H. and Clark, E.M. (2011). Epidemiology of generalized joint laxity (hypermobility) in fourteen-year-old children from the UK: A population-based evaluation. Arthritis & Rheumatism, [online] 63(9), pp.2819–2827. doi:https://doi.org/10.1002/art.30435.
- NHS Choices (2019). Overview – Marfan syndrome. [online] NHS. Available at: https://www.nhs.uk/conditions/marfan-syndrome/.
- Kennedy, M., Loomba, K., Ghani, H. and Riley, B. (2022). The psychological burden associated with Ehlers-Danlos syndromes: a systematic review. Journal of Osteopathic Medicine, 0(0). doi:https://doi.org/10.1515/jom-2021-0267.
- Berglund, B., Pettersson, C., Pigg, M. and Kristiansson, P. (2015). Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study. BMC Musculoskeletal Disorders, 16(1). doi:https://doi.org/10.1186/s12891-015-0549-7.
- Ishiguro, H., Yagasaki, H. and Horiuchi, Y. (2022). Ehlers-Danlos Syndrome in the Field of Psychiatry: A Review. Frontiers in Psychiatry, 12. doi:https://doi.org/10.3389/fpsyt.2021.803898.
