Question 1

How do I get a diagnosis of EDS/HSD as an adult?

Accepted Answer

We suggest you read the EDS HSD criteria from  the EDSSociety or link here.  Write down your symptoms and any family history. Make an appointment with your health professional and describe the symptoms.  You might be signposted to a specialised health hub for assessment if in the UK.

In other countries you might go straight to a rheumatologist.  If they are unaware of HSD/EDS you might be able to link to the criteria. If there are severe symptoms and evidence of a rarer type of EDS then a geneticist might be sought.  It might need a second appointment to do a thorough assessment and for some further referrals.  In the UK you can pay and go privately, but you will still generally still need a referral first.

Question 2

How do I get a diagnosis for a child/young person?

Accepted Answer

For a child or young person, EDS HSD is rarely diagnosed unless a very rare type, and they are often given a label of being hypermobile but there is new criteria here on the EDSSociety. The new diagnostic criteria for children and young people is paediatric Generalised Joint Hypermobility (pgGJH) or paediatric generalised Hypermobility Spectrum Disorder (pgHSD).

Children are not diagnosed under the age of 5.

Question 3

What is Neurodivergence? What's the connection with symptomatic hypermobility?

Accepted Answer

Neurodivergence is a brain that behaves, learns and processes differently from the typical majority or neuromajority.  We believe it is likely that the connective tissues are different in some of these neurodivergences.    We focus on Autism, ADHD, Dyspraxia, Tourettes/TICS and do include dyslexia and dyscalculia. ​You can also have other acquired neurodivergence.

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Our charity focuses on Autism, ADHD, Dyspraxia, Tourette's, often occur with dyslexia, dyscalculia, and dysgraphia.

There are strong links between neurodivergence and hypermobility, and this is an exciting area of research we are supporting. It is likely that connective tissues are different from the general population in some of these neurodivergences. We have posted some of the research studies on our research page or ones we are involved in as well!

Question 4

Where can I find out more information about EDS/HSD?

Accepted Answer

Feel free to join us as a member or follow us on social media to find up to date information and posts.  We also have a lively Facebook group.  
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For children and young people they will be referred to a paediatrician in the UK who will oversee all issues for the child.  Children are not often diagnosed early as most children are naturally joint hypermobile (flexible).  However symptomatic hypermobility is much more than that and can affect the whole body/brain. Diagnoses are pGJH or pgHSD or EDS for children and young people since 2023. 
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For children, young people, parents/carers, professionals in education, social care, health or academics we would suggest reading the articles here and the latest peer-reviewed paper in the Journal Child Care in Practice: Co-occurring Physical health challenges in neurodivergent children and young people: A topical review and recommendation.

Question 5

Can symptomatic hypermobility affect the heart?

Accepted Answer

Hypermobility doesn't usually affect the heart muscle directly but can also cause abnormalities in the part of your nervous system that controls bodily functions you do not actively think about, such as the beating of your heart. This is known as your autonomic nervous system.
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These abnormalities can cause problems when you stand up or sit in the same position for a while. Your blood pressure can drop to low levels, making you feel sick, dizzy and sweaty. You may also faint.

In some people, these abnormalities can lead to postural orthostatic tachycardia syndrome (POTS). POTS causes your heart rate to increase rapidly within a few minutes of standing up. You may also experience:

dizziness or fainting
headaches
tummy upsets
sweating
a sensation of anxiety
purple puffy fingers and feet
a pounding or fluttering heart beat (palpitations)

Question 6

How does hypermobility affect the gastrointestinal tract?

Accepted Answer

Symptomatic Hypermobility can cause symptoms that affect your digestive system because the muscles that squeeze food through your digestive system can weaken.
A recent article is here.
This can cause a range of problems, including:
Gastro-oesophageal reflux disease (GORD) – where stomach acid leaks
 
ks from your stomach to your gullet, causing symptoms such as heartburn
Bloating
Fear of Food
Diarrhea
Vomiting
Reflux
Dysphagia
Gastroparesis – where the stomach has difficulty emptying its contents into the small bowel, which can cause bloating and nausea. 
GORD/GERD Constipation Irritable bowel syndrome (IBS) – a disorder that affects the digestive system, causing tummy pain, severe bloating, diarrhoea and constipation.

Question 7

What other issues can symptomatic hypermobility cause?

Accepted Answer

People with hypermobility may have other related conditions and further symptoms, including:
stress incontinence – a type of urinary incontinence that occurs because the pelvic floor muscles are too weak to prevent accidental urination.
hernias – where an internal part of the body, such as an organ, pushes through a weakness in the muscle or surrounding tissue wall.
'Allergies': Some are more prone to direct food allergies.
Some indirect due to MCAS, this can affect exzema, hayfever, rhinitis, pseudoasthma, IBS, heart palpitations, blood pressure, anxiety, skin rashes, hives, itch and heat.
In women, pelvic organ prolapse – where the organs inside the pelvis slip down from their normal position
Varicose veins – swollen and enlarged veins, usually blue or dark purple.
Flat feet – where the inner part of your feet (the arch) is not raised off the ground when you stand or alternatively.
Very high arches, cavus, but the arch collapses on weight-bearing or with age.
Migraines.
Skin differences are either very thin and delicate to bruise or thick, velvety skin – often unlined striae. 
osteoarthritis earlier in life than usual.

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