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

We suggest you read the EDS HSD criteria on the EDSSociety and also the GP toolkit. Write down your symptoms and any family history. Make an appointment with your GP and describe the symptoms. If they are unaware of HSD/EDS, alert them to the toolkit.  It might need a second appointment to do the assessment. Often your GP will not be able to do the assessment and will refer you to a rheumatologist. If you want you can pay and go privately but you will still generally need a referral in the UK.  

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

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). 

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

Neurodivergence is a brain that behaves, learns and processes differently from the typical majority. We focus on Autism, ADHD, Dyspraxia, Tourettes/TICS and do include dyslexia and dyscalculia. You can also have acquired neurodivergence and mental health neurodivergence.

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

There are strong links between neurodivergence and symptomatic hypermobility, and this is an exciting area of research we are supporting. It is likely that connective tissues are different than the general population in some of these neurodivergences.

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

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.  

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. 

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.

Can symptomatic hypermobility affect the heart?

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.

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 pulse 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 (heart palpitations)

Can hypermobility affect the gut?

Symptomatic Hypermobility can cause symptoms that affect your digestive system, because the muscles that squeeze food through your digestive system can weaken.

 

This can cause a range of problems, including:

  • gastro-oesophageal reflux disease (GORD) – where stomach acid leaks from your stomach to your gullet, causing symptoms such as heartburn

  • 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

What other issues can symptomatic hypermobility cause?

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 more prone to direct food allergies 

  • Some indirect due to MCAS, this can affect exzema, hayfever, rhinitis, pseudoasthma, IBS, heart palpiations, 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 either very thin and delicate to bruise or 

  • thick, velvety skin - often unlined

  • Striai 

  • osteoarthritis earlier in life than usual

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