Hypermobile Ehlers Danlos Syndrome
“Rather than a single entity, Hypermobility is now understood as a spectrum of disorders. At one end there is simple joint hypermobility, where increased flexibility is often the only sign, while at the other end sits hypermobile Ehlers Danlos Syndrome (hEDS), a genetic connective tissue disorder which can cause wide-ranging issues throughout the body.”
What Is It?
Rather than a single entity, Hypermobility is now understood as a spectrum of disorders. At one end there is simple joint hypermobility, where increased flexibility is often the only sign, while at the other end sits hypermobile Ehlers Danlos Syndrome (hEDS), a genetic connective tissue disorder which can cause wide-ranging issues throughout the body. As hEDS can affect the joints, the heart, the gut and even the brain, diagnosis can be difficult, as specialists in all of these fields focus only on their area of expertise – without ever putting it all together to find the root cause. Many of the patients we see have spent years thinking that they are simply incredibly unlucky, suffering from numerous isolated issues. When they finally learn that hEDS is responsible for everything, the relief can be enormous.
What Are The Features of hEDS?
Joint/muscle pain
- Joints are stabilised by a combination of connective tissue (ligaments etc) and muscles. With hypermobility, the connective tissue will be more “stretchy”, and therefore less effective at this task. This can lead to injuries to the joints themselves, as well as tight, achy muscles, as they work extra hard to compensate.
Dislocations
- People with hEDS will often experience joint dislocations during their lives, as a result of the aforementioned “stretchy” connective tissues. Common sites of this include the shoulders, kneecaps and hips.
Skin Features
- Thin, translucent, stretchy skin that bruises easily is common in people with hEDS, due to the high amounts of connective tissue present within our bodies’ outer layers. Hypermobile skin is often very soft and smooth too, so this feature can actually be advantageous!
POTS
- Postural orthostatic tachycardia syndrome is a condition that causes issues such as dizziness, light-headedness and even fainting when standing up. It is related to the body’s ability to regulate its blood pressure, and is very common in hEDS.
Neurodivergence
- Although the exact cause has not yet been established, it is well known that conditions such as ADHD and Autism are more common among hypermobile people. Research into this area is in a relatively early stage, so hopefully this link will become clearer over the next few years.
Gut Issues
- The organs which make up the gut, just like everywhere else in the body, contain connective tissue. This can lead to problems such as IBS, which is very common amongst the hEDS population.
Anxiety
- Another area where further research is sorely needed is the link between hEDS and anxiety. Again, people with hEDS are far more likely to suffer with it, however the reasons for this correlation are poorly understood.
Fibromyalgia/Chronic Fatigue Syndrome
- The majority of the patients we see with these two debilitating conditions also have some kind of hypermobility. The reason for this link is not clear, although it has been suggested that the chronic pain frequently experienced by people with hEDS can, over time, lead to the central nervous system becoming sensitised. This sensitisation seems to be a key factor in both fibromyalgia and chronic fatigue, so this explanation does seem plausible. Research into this link is growing, and this is something that we are looking into ourselves.
Is There A Cure?
As a genetic issue, there is no cure for hEDS. However, correct management can make an enormous difference to the effect it has on your life. There are many treatments and lifestyle changes that can be done to help with all of the issues listed above, but it is important that this advice is personalised, as hEDS affects everybody in a unique way. Living with hEDS can be difficult, but the correct knowledge can make things much easier. Dr Stephanie Barrett and the team at RTMS London are experts in managing this condition, and offer both cutting edge treatments and access to specialists in various relevant areas, in order to help you live well with hEDS.
To find out more about the ways we can help, contact us.
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