Always hurting yourself? There could be more to it than simply being 'accident-prone'. Bruising easily, the tiniest scratch breaking your skin, or spraining your ankles and wrists countless times can all be signs of Ehlers-Danlos Syndrome – a connective tissue disorder. EDS is considered a rare disease, the NHS website states there are just 50 cases in 100,000 people. But the number of people living with Ehlers-Danlos may have been vastly underestimated. In fact, recent research shows that EDS could be much more common than previously thought because many patients are initially misdiagnosed.
A study has revealed that in the UK there are an estimated 10 cases of Ehlers-Danlos Syndrome per 5,000 people. Way above the official NHS stats. Even more worryingly, the research team discovered it often took around a decade for people to get a diagnosis. And there was also a large discrepancy in the mean age of diagnosis between genders. With men diagnosed around 8.5 years earlier than women – sigh.
While it might be a reasonably rare condition, if you're such a regular at A & E that most of the nurses know your name, it could be time to delve a bit deeper and see if EDS could be at the root of your problems. So, what are the symptoms you need to watch out for and what exactly is EDS?
What is Ehlers-Danlos Syndrome?
EDS is a genetic condition that affects your connective tissue, which provides essential support in your skin, tendons, ligaments, blood vessels, internal organs, and bones. There are 13 different types of Ehlers-Danlos Syndrome and they are all caused by faults in certain genes. If you have this fault then the collagen in your connective tissue is more fragile, stretchy, and vulnerable to damage.
What are the main symptoms of Ehlers-Danlos Syndrome?
How you feel often depends on the type of EDS you have. The most common type is Hypermobile EDS (hEDS), which can cause loose, unstable joints that dislocate more easily. As well as joint pain, fatigue, skin that bruises easily, digestive issues like heartburn and constipation, dizziness, and loss of balance. So, not only are you more likely to harm yourself if you do fall over, you're also at a much greater risk of taking a tumble in the first place too – typical.
Classical EDS tends to affect the skin more than other types, so you might find your skin is very fragile. So much so that it can even split. Especially over thin and mobile areas like the forehead, knees, shins, and elbows. You'll also find you bruise more easily. And if you cut yourself, wounds are slow to heal and leave wide scars.
You can find out more about the different sorts of EDS, and loads of helpful info for those living with the syndrome here on the Ehlers-Danlos Support UK website.
How do you manage Ehlers-Danlos Syndrome?:
Unfortunately, there is no cure for Ehlers-Danlos Syndrome. But there are all sorts of ways to support your health if you're living with EDS. Physiotherapy, gentle exercise, and activity are all key to help to strengthen muscles, stablise joints and improve function. Just make sure you find a therapist who has experience working with people with EDS.
Eating a diet that includes plenty of protein, healthy omega-3 fatty acids and calcium will help with collagen production and tissue repair. And, as with all chronic health conditions, getting a decent night's shut-eye and avoiding stress as much as possible will do you no end of favours.
Can supplements help with EDS?
Taking the right supplements can help to support your health if you have EDS. You can top up your levels of nutrients that promote good tissue health and strong bones. And while taking a supplement certainly isn't a substitute for 8 hours of sleep, or a magic solution if a stressful week has caused your symptoms to flare up, it's a positive, proactive step you can take each day, that won't get de-railed when life gets in the way.
What's more, vitamin patches are the ideal way to take supplements if you're living with Ehlers-Danlos Syndrome, because nutrients are delivered through the skin, bypassing the gut. Many EDS sufferers have digestive problems. This is because the syndrome can affect the structure of the gut and the muscle movements which push food along the digestive tract. Often resulting in malabsorption and oral supplements not being digested properly, so you won't feel the benefit. One of our customers who has EDS, couldn't believe how much more effective using patches was: "I can't absorb vitamins and supplements like others…. I know how much your patches have helped me, and believe me I have tried many types of supplements and vitamins over the years!!"
What are the best supplements if you have Ehlers-Danlos Syndrome?:
1. Vitamin C:
Not only is vitamin C an excellent supplement to boost your immune system and overall wellbeing, it's also involved in collagen synthesis – making it a must for EDS patients. Taking vitamin C regularly can help support connective tissue formation and reduce skin fragility. And it's clinically proven – studies have shown that EDS sufferers who took vitamin C every day for a year found wound healing and muscle strength both improved.
2. Vitamin D3/K2:
Research shows that if you have Ehlers-Danlos Syndrome you're much more likely to have low vitamin D levels. A major bummer, because D is essential for healthy bones and many types of EDS can lower bone density and mineral content. The good news? You can boost your levels with a supplement like our Vitamin D3/K2 patch. Both these vitamins will help your bones to absorb calcium, and K2 also helps the body regulate normal blood clotting – a double win if you have EDS.
Got EDS and looking for a way to strengthen your joints? Alongside physio and gentle exercise, an excellent way to do this is to take Glucosamine. Essential for making glycosaminoglycans and glycoproteins in the body, glucosamine can help to form and replace the cartilage in ligaments, tendons, and joints. It also encourages the production of synovial fluid, which makes joints move smoothly. Glucosamine works best when taken alongside chondroitin, and our Glucosamine Patch has both!
Ehlers-Danlos Syndrome is also associated with brain fog and low mood and energy. B12 is an excellent supplement to target all these symptoms, but that's not all! 80% of EDS patients also have POTS (Postural Orthostatic Tachycardia Syndrome) which is linked to B12 deficiency. So taking a B12 supplement won't just improve your cognition and give you an energy boost, it could also help tackle other EDS complications. The B12 Plus Patch is here.
5. Co-enzyme Q10:
Have a scroll through EDS support forums and you'll probably find lots of rave reviews about Co-enzyme Q10. Research into exactly how CoQ10 helps EDS patients is still in its infancy, but it's thought that by reducing oxidative stress in the body, it helps to alleviate symptoms and pain. It also assists cells to produce energy, reducing fatigue, and boosting your get-up-and-go. Give the CoQ10 Plus patch a try here.
Ever heard of NAD (Nicotinamide Adenine Dinucleotide)? Often called 'the fountain of youth', NAD plays a huge role in energy production, but your natural levels can dwindle as you get older. Elevating your levels will help fight fatigue, improve concentration, and has even been linked with a longer lifespan. But there are also specific benefits if you've got Ehlers-Danlos Syndrome, because boosting mitochondrial function should also increase muscle function, thereby stabilising loose joints better and improving posture. The NAD Total Recovery patch is here.