The simple 30-second finger test that can reveal your risk of devastating incurable disease
JOINT flexibility is important for healthy movement and function.
But being able to move your joints in an extraordinary way could be a sign of Ehlers-Danlos syndromes (EDS).
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EDS are a group of inherited disorders that affect connective tissues, primarily the skin, joints, and blood vessels.
These disorders result from genetic mutations that impact the production or structure of collagen, a key protein that provides support and structure to various tissues.
EDS is characterised by joint hypermobility - an increased range of motion in the joints, making them more flexible than average.
Skin can stretch further than normal, joints bend too far and sometimes dislocate, and internal tissues bruise or tear more easily.
According to Jeannie Di Bon, a UK-based hypermobility and EDS specialist, just because you're hypermobile doesn't automatically mean something's wrong with your connective tissue or that you've got a syndrome.
But if hypermobility begins to really bother you and suddenly becomes very problematic (often overnight), it could be cause for investigation for a connective tissue disorder, such as EDS, Di Bon told Newsweek.
Easy test for hypermobility
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The nine-point Beighton score is a simple assessment tool used to evaluate joint hypermobility.
It involves testing the flexibility of several joints, with each positive result adding a point to the score.
A higher score generally indicates greater joint hypermobility.
The score is calculated by adding up the points earned for each of the five tests.
What is Raynaud's disease?
If the finger can be bent back more than 90 degrees - one point for each hand.
If the thumb can be bent backward so that it touches or goes beyond the palm of the hand or wrist - one point for each hand.
Being able to extend the elbow beyond 10 degrees - one point for each elbow.
Being able to extend the knee beyond 10 degrees - one point for each knee.
The ability to bend forward from the waist, with knees fully extended, and touch the palms flat on the floor - one point if the palms can touch the floor.
A score of more than five out of nine, for an adult, indicates a person has hypermobility.
For a child, it's a score of at least six out of nine.
The score alone doesn't confirm EDS.
A hypermobile-EDS diagnosis is "based on a checklist where the patient meets certain criteria, including a Brighton score level," Dr Bernadette Riley, director of the Ehlers‑Danlos Syndrome/Hypermobility Treatment Center at New York Institute of Technology's College of Osteopathic Medicine, told Newsweek.
Official figures for diagnosed cases of EDS in the UK are around 135,000 to 300,000.
The actual number of people living with the condition is likely higher due to underdiagnosis and misdiagnosis.
EDS can manifest at different ages, depending on the specific type, with some forms being evident at birth and others not being diagnosed until adulthood.
While symptoms of inherited EDS can be present at birth, they may not be noticeable until puberty.
Some milder forms are often not diagnosed until early adulthood, while more severe types are typically diagnosed in childhood.
Symptoms of Ehlers-Danlos Syndromes
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.
Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.
Different types of EDS are caused by faults in certain genes that make connective tissue weaker.
There are 13 types of EDS, most of which are rare. Hypermobile EDS (hEDS) is the most common type.
Several types of EDS may share some symptoms.
These include:
an increased range of joint movement (joint hypermobility)
stretchy skin
fragile skin that breaks or bruises easily
If you suspect symptoms of EDS, speak to your GP.
Source: NHS
People with EDS have also been found to be more susceptible to respiratory issues, including a range of symptoms from shortness of breath and exercise limitations to conditions like pneumothorax.
A 2022 study published in Respiratory Medicine and Research found that almost 85 percent of EDS patients had signs of respiratory problems.
And mental health conditions are also widely reported among EDS patients.
Another 2022 study found almost half of the EDS patients surveyed had depression and over half had "probable" anxiety.
There's no cure for EDS, however, various treatments and lifestyle adjustments can help manage symptoms, prevent complications, and improve quality of life.
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