Condition: Ehlers Danlos Syndromes

Ehlers Danlos syndromes (EDS) are a group of conditions that cause an abnormality with connective tissues which make them more flexible.

EDS is thought to affect 1 in 200-500 people, however most are mild or even undiagnosed.

Ehlers Danlos Syndromes can be associated with a range of symptoms depending on the severity of the condition:

  • Loose joints and ‘double-jointed’ (hypermobility)
  • Stretchy skin
  • Difficulty with balance or mobility
  • Hernias
  • Widespread pain or muscles aches
  • Sleep problems
  • Palpitations
  • Bowel problems

Ehlers Danlos syndromes (EDS) are a group of genetic conditions.

The most common types of EDS are inherited with an autosomal dominant pattern meaning that one of the parents of an affected individual will also be affected. However, rarer types may be inherited with an autosomal recessive inheritance meaning an affected person will have inherited two copies of a faulty gene, one from each parent. This means that an affected individual’s parents will only have the condition if they also have two copies of the faulty gene.

Ehlers Danlos syndromes (EDS) can be suspected after taking a thorough history and examination. Other clues for a diagnosis may also include taking a full history about problems affecting other family members.

If the condition is suspected, specialist tests, including genetic testing, may be used to distinguish the type of EDS.

Ehlers Danlos Syndromes Treatment

Whilst there is no cure for Ehlers Danlos syndromes (EDS), the goal of treatment is for symptom control. This mainly includes physiotherapy to develop muscle strength and balance.

Pain management in EDS is poorly understood, however most people get benefit from regular pain killers such as anti-inflammatory medications. Other medications such as opioids (e.g. codeine, tramadol and morphine) may be used in conjunction to control severe pain.

Medicinal cannabis can be considered when first line therapies have not achieved adequate pain control.

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If you are a patient or carer seeking an appointment to discuss treatment with medical cannabis, you can complete this form and we can assist you with this.

Eligible patients can provide us with their healthcare records or we can obtain these through your GP. This is to confirm that a patient’s condition has been fully assessed and all other treatment options have been attempted. We will ensure that the primary care provider receives all treatment communication to maintain the highest level of clinical governance.

We also accept referrals from healthcare professionals.

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