My Journey To Understanding Hypermobile Ehlers-Danlos Syndrome (hEDS)

Have you ever been told that you’re “double-jointed”? For some, it’s just a cool party trick. But for others, it can be a sign of a condition called Hypermobile Ehlers-Danlos Syndrome (hEDS). hEDS is a connective tissue disorder that affects the collagen, which is the protein that gives your skin, joints, and tissues their strength and structure.

While hEDS isn’t the most well-known condition, it’s actually thought to be the most common form of Ehlers-Danlos syndrome and recently, at the age of 36yrs I found out that I have it after a lifetime of unexplained symptoms. So, what does it mean to live with hEDS? Let’s take a look…

The Signs And Stretches Of hEDS

The hallmark feature of hEDS is joint hypermobility. This means that your joints naturally have a greater range of motion than usual. You might be able to bend your fingers way back, or your elbows hyperextend. But loose joints can also lead to instability, pain and frequent dislocations. My hEDS was discovered after my finger continuously started to dislocate in my mid-thirties, which is a symptom that I hadn’t experienced until now. I have been super flexible since my childhood, before ever training or stretching, decades before training to become a professional natural bodybuilder and fitness journalist, writing for and featuring in worldwide fitness magazines in my twenties.

hEDS can also affect other parts of your body. People with hEDS often have soft, velvety skin that bruises easily. Fatigue is another common symptom, along with digestive issues, dizziness, and problems with internal organs. My medical records are littered with episodes of me fainting without warning and having being dizzy spells.

I’ve suffered from IBS my entire life, which has gotten worse with age and have often collapsed from sheer exhaustion which was always excused as an acceptable and expected part of life from being a parent, dealing with stress and responsibility or leading a plant-based diet and therefore needing more iron as opposed to finding and treating the root cause of my symptoms.

Seeking Answers, And A Diagnosis From Your Doctor

Doctors diagnose hEDS based on your medical history, a physical exam, and sometimes your family history. After years of unexplained symptoms, it was in fact a stranger on the internet who commented on my tik tok, after noticing that my arms are hypermobile, and asked me if I had hEDS to which I had to google it as I had no idea what it was. A few weeks later my doctor diagnosed me and everything within my life made so much sense.

Your doctor should ask you about your symptoms, when they started, and how they affect your daily life. They’ll also want to know about any past injuries or surgeries that you’ve had, and for me, whilst my symptoms were inconvenient and uncomfortable growing up, they’ve now got to the point of pain, dislocations and premature labour with both of my children.

The doctor performs a physical examination to check your joints for hypermobility, which means they must be able to move beyond the normal range of motion. They’ll also look for other signs of hEDS, such as very stretchy skin or easy bruising. I had a black finger at my appointment because of my knuckles dislocating. It’s worth nothing that if you have a close relative with hEDS, it’s more likely that you’ll have it too.

The diagnosis of Hypermobile Ehlers-Danlos Syndrome (hEDS) is based on two main criteria:

Criterion 1: Generalised Joint Hypermobility: This assesses your joint flexibility. There are age and sex-specific scoring systems using the Beighton score, which involves various tests of joint mobility. You’ll need to meet a certain score based on your age and gender.

Criterion 2: Two or More Features from Category A or Positive Family History. Category A includes features related to skin, tissue, and certain physical characteristics. You need at least two of these, though there are many more listed. I shall mark those that I have with a tick for reference:

  • Unusually soft or velvety skin – ☑️ My skin has always been very smooth and silky
  • Mild skin hyperextensibility (increased stretchiness) ☑️ The skin on my torso is incredibly stretchy even before having my two children
  • Unexplained stretch marks (striae) ☑️ I have had stretch marks to my stomach, hips and thighs from a young age
  • Easy bruising with minimal trauma ☑️ The slightest bumps or knocks make me change colour
  • Recurrent or multiple hernias
  • Specific types of scarring ☑️ I have raised scarring all over me from small and large traumas
  • Organ prolapse
  • Certain facial features and dental crowding ☑️ I had two upper teeth removed due to over crowding
  • Arm span to height ratio exceeding a specific value
  • Mitral valve prolapse (diagnosed by echocardiogram)
  • Aortic root dilatation (diagnosed by echocardiogram)

Following my diagnosis, my doctor listed to my heart with a stethoscope and then booked me in for a blood test, ECG and echocardiogram to determine if my condition is vascular, as this can in some cases limit life expectancy. The ECG involved returning to my doctors surgery to have a follow up appointment in which a series of sticky pads were placed around my heart and chest and then wired to a machine. I laid on the doctors bed for a few minutes as it monitored my heart, before my doctor translated the results for me for peace of mind before leaving my appointment. I was told that my heart is in good health and am presently awaiting my echocardiogram at the hospital. My blood results have also returned as overall good health, with my vitamin D being a little low and my kidney function lowering slightly since my previous test, however this may not be related to my EDS.

It’s important to note that your doctor will use their judgement and consider all your symptoms to make a formal diagnosis. This information is not a substitute for professional medical evaluation but can be a useful guide to understand if you may need a consultation.

Self-Testing For hEDS With The Beighton Score

The Beighton score is a nine-point system which is used to assess generalised joint hypermobility. The joints assessed are the knuckles of both left and right hand little fingers, the base of both thumbs, both elbows, both knees and the spine.

  • One point is scored for each joint that meets the following criteria:
    • Little fingers: Can be hyperextended (bent backwards) beyond 90 degrees with the forearm resting flat on a surface.
    • Thumbs: Can be passively bent back to touch the forearm.
    • Elbows: Can be hyperextended beyond a straight position.
    • Knees: Can be hyperextended beyond a straight position.
    • Spine: While standing with palms flat on the floor in front of you, you can touch your palms completely flat without bending your knees.

A higher score indicates greater joint hypermobility. There’s no universally agreed upon cut-off for a positive Beighton score. However, a common reference is that 4 or more out of 9 points suggests generalised joint hypermobility. It’s important to remember the Beighton score is just one piece of the puzzle. Doctors consider your age, sex and other factors when interpreting the score in relation to receiving a hEDS diagnosis.

Living With Loose: Challenges And Care

hEDS can be a frustrating and unpredictable condition. There’s no cure, but there are ways to manage the symptoms and improve your quality of life. Physical therapy can help to strengthen muscles and improve joint stability. Pain management is also important, and may involve medication, heat/ice therapy and relaxation techniques.

For many with hEDS, pacing and modifying activities are key. Learning to listen to your body and avoid overexertion can help to prevent injuries and flare ups.

Finding Your Zebra Tribe: The hEDS Community

hEDS is a rare condition that can sometimes feel isolating. But there’s a vibrant online community of people with hEDS who share experiences, offer support, and swap tips. You can also connect with specialist doctors and organisations for the latest information and resources online.

Living life with hEDS can certainly be a challenge, but with the right support and management strategies, you can still live a full and active life.

So Get Your Zebra Stripes On! Join The Ehlers-Danlos UK Dazzle Walk

The Ehlers-Danlos Support UK‘s Dazzle Walk has arrived for May 2024, and it’s a fantastic way to raise awareness for Ehlers-Danlos Syndrome (EDS) while also getting some exercise and having fun.

The Dazzle Walk is a fundraising event which is open to everyone. Whether you can walk 5 km or 50,000 steps, there’s always a way to participate because it’s all about getting involved, raising money for a great cause, and celebrating the zebra community. The zebra is the unofficial mascot of EDS as throughout medical students training, they are taught to think horse and not zebra – that is to say, what is the most likely cause of symptoms (the horse) rather than the rarer possibility (the zebra).

As EDS is a group of connective tissue disorders that can cause a variety of symptoms, including joint hypermobility, chronic pain, and fatigue. It’s often an invisible illness that people don’t realise or recognise, so the Dazzle Walk is a chance to raise awareness and show solidarity with those affected by EDS.

If you’d like to take part in this fantastic event then head over to the Ehlers-Danlos Support UK website where you’ll find all of the information that you need to register, set up a fundraising page, and download fun resources. You can then don your most dazzling zebra attire from black and white stripes to leggings and tutus, the more fun the better!

You can choose to walk anywhere that you like, for any distance that suits you.Whether it’s a lap around your local park with friends or a solo trek through the countryside, the choice is entirely yours. Why not get out in the beautiful sunshine with your family, friends and work colleagues to share your fundraising page and encourage them to donate or join you upon the walk.

The Dazzle Walk is a fantastic way to support the Ehlers-Danlos Support UK as the money raised goes towards funding vital research, providing support services for people with EDS and raising public awareness. It’s always a great day to take exercise, have fun, and make a real difference to the EDS community. I would like to send love and light to you all, a deep-hearted hug and supportive hand towards whatever challenge and obstacle comes our way in life.

Exercise & Movement For Adults With hEDS

Ehlers-Danlos Support UK is a hub of information for all things hEDS, and after reading through their extensive information I thought that it may be helpful here to summerise some of the key points when it comes to fitness and exercise. Whilst you can’t prevent yourself from having hEDS/HSD, you can still help to minimise the risk of developing developing further conditions such as diabetes, high blood pressure, high cholesterol, heart disease, obesity, osteoporosis, arthritis, depression and anxiety by taking safe and frequent exercise.

Challenges that a person faces with hEDS when it comes to exercise may include unstable joints, chronic pain, postural tachycardia syndrome (PoTS), limiting gastric symptoms and fatigue, yet taking exercise is still very important, offering you the opportunity to improve your functional ability rather than sitting down all day and seizing up.

Firstly, it’s important to ensure that you speak to your GP or medical professional to ensure that you are suitable to take exercise, which may also include speaking to a cardiologist, physiotherapist, gastroenterologist or rheumatologist. As everyone is individual, and hEDS/HSD affects everyone in different ways, it’s vital that you have an individual assessment for your ability rather than follow a one-size-fits-all programme, as through a professional assessment you can determine the most appropriate exercise regime for you to follow. A physiotherapist is also able to monitor and adapt the exercises that are most suitable for you accordingly.

When it comes to cardio, it’s best to start with low-intensity exercise for 5-10 minutes at a time, two to three times per week. Walking at your own pace is a wonderful way to keep active, get outside and enjoy the calming effects of nature. Start small and build up gradually if and when you are able to, as doing something is far better than doing nothing.

Focusing on strength exercises, such as lifting weights, enhances muscles, ligaments, tendons and bones, making them stronger to reduces the risk of injuries whilst supporting your joints. Starting off with bodyweight exercises, such as sitting on a chair and standing up, can gradually progress to using resistance bands and even dumbbells as you gain strength. However, it’s important that you listen to your body, start low and build up gradually, stopping as soon as you feel any pain, or if your daily pain should worsen.

The basic level mat-work exercises of pilates can be modified to be suitable for hEDS by building core strength, taking caution to avoid excessively difficult movements and making sure that the correct posture is maintained and targeted muscles are working – the instructor or physiotherapist can advise on what modifications may be best.

Despite being hypermobile, parts of the body can still get stiff if unused, which is a common complaint. This occurs because of poor posture and being static for too long, as many tend to sit, stand or lie in one position for extended periods of time throughout the day. It’s important to change position regularly, perform gentle stretches and mindful movements to address any stiffness that develops. Yoga can also be a useful tool providing you don’t over stretch or hyperextend your joints. You can find more detailed and in depth information about exercise and movement for adults with hEDS here.

I hope that if you are facing these symptoms, or know somebody affected by hEDS, that you may take comfort in knowing that you are not alone and there are answers and support available.
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Tracy Kiss

Social influencer, Bodybuilder, Mother, Vegan
London, UK

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