Ehlers-Danlos Syndromes

Ehlers-Danlos Syndromes

What are Ehlers-Danlos syndromes?

Ehlers-Danlos syndromes are a group of rare, genetic conditions that affect connective tissue. That means it could affect the skin, tendons, ligaments, blood vessels, internal organs and bones – anywhere that is supported by connective tissue. There are several 13 different types of Ehlers-Danlos syndrome, affecting about 1 in 5,000 individuals worldwide in total.


What are the symptoms of Ehlers-Danlos syndromes?

Although the different types of Ehlers-Danlos syndrome have some shared symptoms, there are also differences between them, as they affect different types of connective tissues. The shared symptoms include:

  • An increased range of joint movement (also known as joint hypermobility)
  • Stretchy skin
  • Fragile skin that breaks or bruises easily

Hypermobile Ehlers-Danlos syndrome (hEDS) is the most common type, while still being very rare. The symptoms of hEDS, along with those above, include:

  • Loose or unstable joints that are especially susceptible to dislocation
  • Joint pain and clicking joints
  • Fatigue
  • Digestive problems, like heartburn and constipation
  • Dizziness
  • Problems with internal organs
  • Problems with bladder control

There are three other more common types of Ehlers-Danlos syndromes: classical, vascular, and kyphoscoliotic. They each have their own unique symptoms, just like hEDS. 

Those for Classical Ehlers-Danlos syndrome include:

  • Loose or unstable joints that are especially susceptible to dislocation (much like hEDS)
  • Fragile skin that breaks easily, especially around the forehead, knees, shins, and elbows
  • Smooth, velvety skin that breaks easily
  • Delayed wound healing
  • Easily scarring skin
  • Hernias and organ prolapse

Those for Vascular Ehlers-Danlos syndrome include:

  • Thin skin with visible small blood vessels, particularly on the upper chest and legs
  • Fragile blood vessels that can bulge or tear, often resulting in serious internal bleeding
  • Risk of organ problems, such as bowel tears, womb tears (in late pregnancy), and partial collapse of the lung
  • Hypermobile fingers and toes
  • Unusual face features, such as a thin nose and lips, large eyes, small earlobes
  • Varicose veins
  • Delayed wound healing

Those for Kyphoscoliotic Ehlers-Danlos syndrome include:

  • Curvature of the spine, starting in early childhood and getting worse in teenage years
  • Weak muscle tone from childhood (this may cause delays in sitting and walking in early childhood)
  • Fragile eyes that can easily be damaged
  • Soft velvety skin that is stretchy and bruises and scars easily

All of these individual symptoms can occur alongside the general symptoms at the top of this section. For the other, even rarer types of Ehlers-Danlos syndromes, there are detailed symptoms and advice on the EDS Support UK website.

For some people, these symptoms can be quite mild, and for others, they can be debilitating and painful. In extreme cases, some forms of Ehlers-Danlos syndromes can be life-threatening.


What causes Ehlers-Danlos syndromes?

Ehlers-Danlos syndromes are genetic and most often inherited from one or both parents. Depending on the type of syndrome, the cause is related to a certain faulty gene. Sometimes, this faulty gene can occur on its own, without being passed down by a parent.

A person with EDS can only pass on the same type of syndrome to their children, but the severity of the condition may differ within the family.


What treatment options are available?

There is no specific treatment or cure for Ehlers-Danlos syndromes, but there is support on how to manage the symptoms. Some helpful services for those with Ehlers-Danlos syndromes include:

  • Physiotherapy, to practice exercises to strengthen joints, avoid injuries, and manage pain
  • Occupational therapy, to manage daily activities and offer advice on helpful equipment
  • Counselling and CBT, to cope with the long-term pain and effects of the syndromes
  • Regular scans, to keep an eye out for internal organ problems, if related to that syndrome
  • Genetic counselling, to help you learn more about your condition and the risks of passing it onto any future children

To help manage pain or injuries related to Ehlers-Danlos syndromes, GPs and consultants can also offer prescription medications, depending on the circumstances.


How can medical cannabis help with Ehlers-Danlos syndromes?

Although there are no dedicated studies to see whether medical cannabis directly helps with Ehlers-Danlos syndromes, due to the rarity of the condition, there is evidence to suggest it can help with the symptoms of chronic pain. Indeed, a study from 2017 showed that inhaled cannabis was consistently effective in managing chronic pain.

As many of the symptoms, such as joint difficulties, broken or bruised skin, and so on, can cause people with Ehlers-Danlos syndromes considerable pain. Using medical cannabis as an extra form of relief alongside traditional treatment can provide some support.

Our experts at The Medical Cannabis Clinics can come up with a personalised treatment plan that suits your needs perfectly. Book in for a free, private consultation, and one of our clinic doctors can guide you through the treatment options for our medical cannabis plans. Appointments start from just £70.

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