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Frequently Asked Questions

I think I have HSD or EDS what do I do?

We suggest you read the EDS criteria and also the EDS RCGP toolkit. Write down your symptoms and any family history. Make an appointment with your GP and describe the symptoms and if they are unaware of HSD/EDS alert them to the EDS RCGP 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.​

What is Neurodivergence?

Neurodivergence is the term for people whose brains function differently in one or more ways than is considered standard or typical.

There are many different ways that neurodivergence manifests, ranging from very mild ways that most people would never notice to more obvious ways that lead to a person behaving differently than is standard in our society.

There are strong links between neurodivergence and hypermobility, and this is an exciting area of research we are supporting. 

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

Feel free to join EDS UK Support, or HMSA, the UK Charities, to find out about other research and facts plus national news and events. 

Can hypermobility affect the gut?

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

  • constipation

  • irritable bowel syndrome (IBS) – a disorder that affects the digestive system, causing tummy pain, diarrhoea and constipation

Can 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)

What other problems can 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

  • 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

  • headaches

  • drooping eyelids

  • a tendency to bruise easily and develop stretch marks

  • thin or stretchy skin

Although a link is not entirely certain, it is thought that some people with hypermobility may be at an increased risk of developing osteoarthritis earlier in life than usual.

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