28 May 2019

EDS Myths and Facts

May is Ehlers Danlos Syndrome (EDS) awareness month (if you haven't already seen my post explaining what EDS is you can find it here). With EDS being a rare condition not many people have heard of it unless they know someone who has it and even then they generally don't know much about it. There's a lot of myths and misunderstandings about the condition (not just within society in general but the medical profession too) so I thought I'd write this post to clear up a few of these myths whilst raising awareness for the condition at the same time. 

Myth: "People with EDS are always tall, thin, white and female".
The Truth: EDSers come in all shapes, sizes, nationalities and genders.

Myth: "Everyone with EDS has the same symptoms".
The Truth: Just as no two zebras have the same stripes, no two sufferers have the same symptoms. Each person with EDS is unique.

Myth: "There's no cure or treatment for EDS, therefore it's pointless to confirm diagnosis".
The Truth: Whilst it's true that there's currently no cure for EDS, there are treatments available which can help manage symptoms and as a result greatly improve a patient's quality of life. A proper diagnosis can also help the patient and their doctors be aware of possible comorbities, new symptoms or complications that may arise. It also enables sufferers to help prevent further damage to their bodies and family members who may also have EDS to be tested.

Myth: "You don't have any bruises so you can't have EDS".
The Truth: Not everybody who has EDS will bruise easily. Those who do tend to have fragile blood vessels and translucent skin (though this isn't always the case).

Myth: "EDS pain is all in your head".
The Truth: Pain from EDS and related disorders is very real and can be severe, chronic and hard to control. In fact Dr Forest Tennant puts EDS in the category of being in the top three most severe pain problems.

Myth: "Dislocations of unstable joints are painless".
The Truth: Joint dislocations and subluxations can hurt and may even worsen over time. If a joint 'badly' dislocates or multiple dislocate at once it is possible to cry, scream or even faint from the pain.

Myth: "People with EDS only need to exercise and loose weight to feel better".
The Truth: Healthy choices are good but EDS is an incurable, progressive, genetic disorder and no amount of lifestyle changes or exercise will change that.

Myth: "People who are incapacitated one day and fine the next are just fakers".
The Truth: EDS symptoms can be intermittent and unpredictable, changing from day to day (sometimes even within a matter of hours).

Myth: "Hypermobility just means you're bendy. It's benign".
The Truth: Hypermobility can cause extreme pain, injuries and even be disabling.

Myth: "There's no way your hips can just 'pop out' when you're walking".
The Truth: With EDS partial dislocations (subluxations) may occur with very little or no trauma at all.

Myth: "You don't have stretchy skin so you can't have EDS".
The Truth: Stretchy skin is not a distinguishing characteristic among all types of EDS. There are several types of EDS, some with stretchy skin some without. The absence of stretchy skin doesn't necessarily mean that someone doesn't have EDS.

Fact: People with EDS can have wonderfully soft, velvety skin which is often covered in bumps, bruises, scrapes and scars.

Fact: Chronic, widespread and unpredictable pain can significantly impact quality of life for people living with EDS.

Fact: The most common type of EDS (Hypermobile EDS, also known as H-EDS) can't be diagnosed by genetic testing. Instead it is diagnosed based on the Beighton Scale (measuring hypermobility) and clinical observations/symptoms. Researchers are working on finding the right gene(s).

Fact: People with EDS often look perfectly normal, even when facing horrible pain and multiple, disabling, life-threatening conditions.

Fact: From TMJ, food allergies and dental issues to gastrointestinal problems, even eating can be a difficult, traumatic time for those with EDS.

Fact: Many people living with EDS struggle with intermittent impaired cognitive function, commonly known as 'brain fog'.

Fact: Often, diagnosis of EDS takes 10+ years from the initial onset of symptoms.

Fact: With most forms of EDS parents have a 50% chance of passing it on to their child(ren).

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