Jun 29, 2023
If I were to tell you that there’s a genetic disorder that affects your body’s connective tissues – the very stuff that helps hold everything in place – you might think I’m talking about something straight out of a medical drama! But, in fact, it’s a daily reality for many, including myself. It’s called Ehlers-Danlos Syndrome (EDS).
EDS is a group of rare genetic disorders that affect the body’s connective tissues, which serve as the “glue” that gives structure to the skin, joints, blood vessels, and other tissues. It’s like playing a game of Jenga where some of the blocks are a little wonky, making the whole structure less stable.
While symptoms can vary widely, some of the more common ones include hypermobility (excessive flexibility), joint dislocations, skin that bruises easily, and chronic pain. To make matters more complicated, EDS doesn’t come alone to the party – it often brings along friends like Postural Orthostatic Tachycardia Syndrome (POTS), gastrointestinal issues, Mast Cell Activation Syndrome (MCAS), and many other comorbidities.
Let’s be real, living with EDS is not all about medical terminologies and clinical definitions. It’s about navigating the sea of misconceptions that often surround this condition. When myths about EDS prevail, they can lead to misunderstanding, misinformation, and in some cases, even misdiagnosis. That’s why debunking these myths is not just a matter of setting the record straight – it’s a vital part of advocating for our health, well-being, and recognition in the world. Today we’re going to bust six common myths about EDS and shed light on the reality of this complex syndrome.
Understanding is the first step to acceptance, and only with acceptance can there be recovery.
Flexibility may be the first thing that comes to mind when you hear the term 'Hypermobility', but the reality of living with Hypermobile Ehlers-Danlos Syndrome (hEDS) extends far beyond the capability of doing advanced yoga poses or acrobatics. hEDS is not about being 'double-jointed' or showing off impressive party tricks; it's a serious genetic disorder that affects the connective tissues in the body.
People with hEDS have a faulty gene that makes their connective tissue weaker than it should be. This means that joints can be loose and unstable, leading to dislocations and subluxations that cause pain and joint damage. The skin might also be affected, becoming elastic and slow to heal, while in the more serious vascular types of EDS, arteries and certain organs can become fragile and prone to rupture.
From a personal perspective, living with hEDS is debilitating and disabling. It means dealing with constant joint dislocations and subluxations—imagine your shoulders and hips fully dislocating at least once every day, with knees, wrists, ankles, back, and even fingers being prone to subluxation on a regular basis. Yes, it's as painful as it sounds. Living with EDS is not just about managing the pain of these incidents but also coping with the continuous muscle pain as the body tries to compensate for unstable joints.
So, let's debunk this myth: hEDS is not just about being 'flexible'. It's about coping with the complex array of symptoms, managing the comorbidities, and learning to live with the disability.
This myth couldn’t be further from the truth. While it is true that the severity and type of pain can vary widely among people with EDS, many people, myself included, experience chronic pain as a part of our daily lives.
EDS is not just a joint disorder; it's a systemic condition that affects the entire body. For example, it often comes hand-in-hand with Chronic Pain Syndrome, which can manifest as joint pain, muscle pain, and even neuropathic pain. The pain stems from multiple sources - unstable joints can lead to dislocations and subluxations, while weak and overworked muscles can result in muscle pain.
From a personal standpoint, living with EDS means dealing with a significant amount of pain. As I mentioned earlier, my joints are particularly susceptible to dislocations and subluxations. Each incident is not just a moment of acute pain; it also adds to a long-standing, debilitating level of chronic pain.
It's been seven years of trying to find a pain management plan that works for me, and the journey continues. Not everyone with EDS experiences pain to this degree – it's definitely on a spectrum. But it's crucial to understand and acknowledge that EDS can and often does cause pain. It's a part of our reality, and it's high time we debunk the myth that EDS is a pain-free condition.
The misconception that EDS is a condition only affecting the elderly is likely due to the association of joint problems with aging. However, EDS is a genetic disorder, which means it is present from birth and affects individuals throughout their lives, not just in old age.
Symptoms can present at any age, even in infancy, and they often become more noticeable during periods of growth or hormonal changes. For some, EDS symptoms may start subtly, only becoming significant later in life. But for many others, symptoms may be apparent and impactful from early childhood.
While EDS can continue to affect individuals as they age and potentially exacerbate symptoms due to the normal aging process, it is far from being a condition exclusively associated with the elderly. It's important to remember that EDS is a lifelong condition, and individuals of all ages can and do live with its effects daily.
One of the most feared symptoms associated with EDS is joint dislocation. However, not everyone with EDS will experience this. While it's true that EDS can lead to joint instability and dislocations in some people, it's important to remember that the presentation of EDS symptoms varies greatly among individuals.
As we've said before, EDS is a spectrum. For some people, like myself, dislocations are a daily reality. For others, they may never experience a full dislocation. Some might only deal with subluxations (partial dislocations), while others might have stable joints but struggle with other symptoms such as chronic pain, skin fragility, or digestive issues.
By understanding that EDS is a spectrum, we can better grasp the variety of experiences and symptoms that people with EDS have. Remember, just because someone with EDS doesn't experience regular dislocations, it doesn't mean they're not struggling in other ways.
The truth is, while there is no cure for EDS, there are treatment options available that aim to manage symptoms and improve the quality of life for those living with the syndrome. It's essential to understand that treatment is often multifaceted and unique to each person, depending on their specific symptoms and severity of the condition.
In my own journey with EDS, I’ve found that a key aspect of managing my symptoms has been addressing my chronic pain. This has involved a combination of medications, physical therapy, and lifestyle changes. For others, treatment may focus on managing comorbid conditions that often accompany EDS like Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), or gastrointestinal issues.
Another critical component of treatment is working with a team of healthcare professionals who are knowledgeable about EDS. This can include rheumatologists, cardiologists, physical therapists, and geneticists, among others.
The main goal of treatment is to manage symptoms, prevent further complications, and help individuals with EDS maintain the best quality of life possible. It's a journey that requires adaptability and resilience, but it's important to remember that you are not alone.
The reality is, genetic testing can confirm most types of Ehlers-Danlos Syndrome, but not all. Specifically, it cannot confirm a diagnosis of hypermobile EDS (hEDS), the most common type. This can often lead to a more complicated and prolonged diagnostic process for those suspected to have hEDS.
In my own experience, I underwent genetic testing as part of my diagnostic journey. It played a role in the process, but the ultimate diagnosis of hEDS came from clinical evaluations and recognition of my symptoms, rather than a genetic test result.
It's important to note that while genetic testing can't confirm hEDS, it can help rule out other types of EDS or similar genetic disorders. This is a crucial step in the diagnostic process, ensuring that the most appropriate treatment plan is implemented.
So while genetic testing is a valuable tool in the world of rare disorders, it's not the final word in diagnosing all types of EDS.
Living with Ehlers-Danlos Syndrome means navigating a world full of misconceptions and myths. By debunking these common misunderstandings, we can build a more supportive and knowledgeable community for those dealing with EDS. Remember, everyone's journey with this syndrome is unique, and sharing our stories can help others feel less alone in their struggles.
The process of understanding EDS — from symptoms to diagnosis to treatment — is an ongoing journey. But in that journey, there's room for growth, resilience, and most importantly, hope.