Ehlers Danlos Syndromes are a group of conditions that can cause supple joints and stretchy, fragile skin. Support from professionals like physiotherapists can help you manage your symptoms.

In this blog we will share the importance of wearing a medical bracelet for your EDS and how it may help you in an emergency. 

What is Ehlers Danlos Syndrome? 

Ehlers Danlos Syndromes are currently classified into thirteen subtypes, but the hypermobile variant (hEDS) is the most common, yet less serious than the other types. Although, the other types can be more serious (i.e., Vascular) they are often undiagnosed in hypermobile patients. Where there is no other explanation for hypermobility, hypermobility spectrum disorder (HSD) is often used instead of EDS. Knowing the type of EDS or HSD gives you and your medical team some idea of where the symptoms might be coming from and why they are happening.

Each person’s case of EDS or HSD will be unique as there can be a wide range of severity within the symptoms. The NHS website provides an overview of different types of EDS including the rarest and most severe symptoms.

Since symptoms are so wide ranging and considering first aiders do not always match the symptoms to Ehlers Danlos Syndrome, we provide medical jewellery that raises awareness for these rare conditions. This can be particularly helpful in a major event due to vascular EDS, where there is a risk of organ or vessel rupture. Furthermore, a recent survey from the National Center of Biotechnology Information informs that EDS patients may be more resistant to local anesthetic. This suggests that this form of pain relief may be less effective during medical procedures.

How a medical bracelet can support you in an emergency 

Having a medical bracelet would inform medical staff of your EDS if you were unable to, and they could adjust their anesthetics accordingly, as well as knowing to look out for issues caused by other types of EDS, including more serious heart issues.

First aiders and medical professionals will check your Airways, Breathing and Circulation (ABC) as a priority. This means they will take your pulse, so a bracelet, wristband or necklace will be found when they go to your pulse points at your wrist or at your neck. First responders are trained to look for medical symbols on jewellery tags or charms. 

Do I need a medical bracelet if I have Ehlers Danlos Syndrome?

1. Aortic Dissection. Patients with EDS may be susceptible to aortic dissection and rupture, although it can also occur in the medium and smaller arteries. Typically, these arterial complications are recognised as a complication of the vascular type of Ehlers-Danlos syndrome (vEDS), but are also a greater risk in classical (cEDS), and dermatosparaxis Ehlers-Danlos syndrome (dEDS) in particular.

Wearing a medical bracelet can quickly alert others of your Ehlers Danlos Syndrome and provide immediate diagnosis and treatment in an emergency.

2. An invisible illness. As EDS is considered an invisible illness, it can be difficult to understand the challenges people go through. Patients look healthy but they have to deal with pain and fatigue that can make simple tasks like cooking or getting dressed feel like a challenge. EDS can cause a range of symptoms:

• Headaches
• Hypermobility (loose, flexible joints)
• Mast cell activation (an allergic-type reaction to certain triggers, such as sunlight or stress)
• Poor circulation
• Skin that stretches, tears, and bruises easily
• Digestive complications
• Lack of bladder control
• Dizziness
• Extreme fatigue

A medical bracelet with your medical condition ensures you’ll be treated quickly and effectively, as first responders will know exactly what the problem is rather than wasting time figuring out the cause of your illness.

3. Helps others understand that your symptoms are serious. Some symptoms such as localised pain in the abdomen may not appear serious at first, unless your doctor is aware of the increased risk of arterial or intestinal bleeding with EDS. Also, rupture of blood vessels in the brain may appear as a sign of drug overdose, which could delay time for critical interventions.

Wearing a medical alert bracelet containing information about EDS, its potential complications, and the dangers of certain treatments could help prevent injury and be life-saving in emergencies.

What should I engrave on my medical bracelet?

Your bracelet might state your diagnosis, so your symptoms are instantly recognised. Or it could give a directive such as “Call (Name) on +44123 456789” so your family can be notified of what has happened and advise doctors on your behalf.

This is a personal choice and you can reveal as many details as you wish. As a guideline, your bracelet should say "Ehlers Danlos Syndrome” or “Hypermobility Spectrum Disorder” so it explains your symptoms when you cannot.

We can engrave HSD or EDS instead of Hypermobility Spectrum Disorder or Ehlers Danlos Syndrome, to free up space on the tag to add more information. This could include specifying “Vascular EDS” to enable the most effective treatment.

As long as the text is clearly understandable, your medical alert jewellery can be discreet or stylised. But most importantly, choose something that fits with your style and hobbies, so you will actually wear it. If you prefer a more feminine design, our Petal Bracelet or Breeze Bracelet are both good choices. There are more masculine designs such as our Mamba bracelet and plenty for active lifestyles too. If you would like to keep your medical information private, our hidden message wristbands are available in several colours.

Where to go for more support?

Ehlers Danlos Syndromes have historically been considered as a rare condition but recently, doctors have learned that HDS may affect far more people than they first realised and cause seemingly unconnected problems besides joint hypermobility and stretchy, fragile skin.

No presentation of EDS is the same. For some, the condition is relatively mild, while others have more severe symptoms that lead to profound disability. One commonly used analogy is that it’s like a smouldering fire. If you allow it to stay smouldering, it could spread to other parts of the body and burn out of control. You can read more about why it is often misdiagnosed here.

Unfortunately, it is common for this invisible condition to be overlooked or for somebody with EDS to be told they are making up problems or exaggerating their pain. A medical bracelet helps to identify and, in some cases, prove that you need to get on top of a condition in an emergency. It may look mild to a stranger or a new doctor, before you have obvious problems and are in severe pain.

Jameela Jamil is an English actress, presenter and activist. She began her career on Channel 4, then became the radio host of The Official Chart and starred in The Good Place. She had to defend herself against accusations she had Munchausen’s syndrome – a psychiatric disorder in which people feign illness – an allegation started by a writer who didn’t believe her history of health problems.

Russel Kane wrote on a Twitter post that he had to prove his EDS diagnosis by being acrobatic in front of people because no one believed him. “The staff at Stuart Phillips seemed unconvinced I have Ehlers-Danlos syndrome”, he said in his tweet. “I did a cartwheel and showed off my flat feet and everything”.

Madeline Dyer is a fantasy and science-fiction writer based in the UK. Dyer posted a thread on her Twitter page about living with Ehlers-Danlos syndrome in August 2018 after a grocery store clerk did not believe her chronic illness was real.

A medical bracelet can be a subtle sign of solidarity day to day, as well as a useful indicator for medical help in the event you need it. For more public figures to follow in support and solidarity, see the end of the article. As rare as EDS is, remember that there is a community and support available … you are not alone.

Your medical jewellery doesn’t have to focus on your condition alone as it can also be helpful to include a positive message for support. Often, a condition can be upsetting for many and writing a personal message on your medical bracelet may help you through this difficult journey of self-acceptance.

Check out the official EDS website for virtual support.

Why the zebra for Ehlers Danlos Syndrome?

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra”. In other words, look for the most common diagnosis. The zebra became the symbol for the Ehlers Danlos Society because those with EDS and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra”. No two zebras have identical stripes just as no two people with an EDS or HSD have identical symptoms or experiences.

Find your dazzle.

Did you know a group of zebras is called a dazzle? Living with an EDS or HSD is not always easy, but take comfort and pride in the strength and support of the EDS community, and what can be achieved together. As the Ehlers Danlos Society says, “Together, we dazzle!” Read more on their website.

We have a selection of Ehlers Danlos awareness necklaces, bracelets and anklets that feature zebra charms. We also provide a wide range of black and white medical jewellery items and we can customise engravings to get a message that is really personal to you. You could add, “Together, we dazzle!” if you wanted to get matching items for yourself and a family member or a friend who cares for you.

If you would like any advice on how to choose the right style, or confirm the best sizing for you, please drop us a line on help@butlerandgrace.co

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