Ready for a new approach to your Ehlers-Danlos Syndrome pain?

Ehlers-Danlos syndrome (EDS) is a group of rare genetic disorders that affect the connective tissues in the body. Connective tissues are responsible for providing strength and elasticity to various structures in the body, including the skin, blood vessels, joints, and internal organs.

There are several different types of Ehlers-Danlos syndrome, and the symptoms can vary widely depending on the specific type and its severity. Some common features of EDS may include:

1. Hyperextensible Joints: Individuals with EDS often have hypermobile or overly flexible joints, which can lead to joint instability and a higher risk of dislocations and subluxations (partial dislocations).

2. Skin Hyperelasticity: People with EDS often have stretchy, hyperelastic skin that is prone to easy bruising and may be translucent in some cases.

3. Easy Bruising: Fragile blood vessels in the skin can lead to easy bruising.

4. Poor Wound Healing: Wounds may take longer to heal, and scars may be atypical in appearance.

5. Joint Pain: Chronic joint pain is a common symptom, often due to joint instability and frequent dislocations.

6. Gastrointestinal Issues: Some individuals with EDS may experience gastrointestinal problems such as acid reflux, irritable bowel syndrome (IBS), or constipation.

7. Cardiac Abnormalities: Certain types of EDS can affect the heart's valves and blood vessels, leading to cardiac complications.

8. Vascular EDS (vEDS): This is a rare and more severe form of EDS that affects blood vessels, increasing the risk of arterial and organ ruptures. It is potentially life-threatening.

EDS is typically diagnosed through a combination of clinical evaluation, family history and genetic testing (NB we're unable to test genetics at Leva).

Management and treatment of Ehlers-Danlos primarily focus on symptom relief, pain management and physical therapy to help reduce the impact and improve ability to do activities and function. In some cases, surgery may be required to address joint or organ complications.

It's important to note that EDS is a rare condition, and the specific symptoms and their severity can vary widely among individuals.

At Leva we're able to assist in the management of pain related to Hypermobility EDS (Type 3).

Yes, Medical Cannabis is legal in the UK. Since the law was passed in 2018, Medical Cannabis is allowed for the treatment of chronic pain conditions if other treatments have proven ineffective. Our consultants are pain specialists with experience working with Medical Cannabis.

There is ongoing global research and real-world data that shows the efficacy of Medical Cannabis. It may benefit chronic pain sufferers where other first-line medications have failed.

Medical cannabis works by acting on your endocannabinoid system (ECS). This exists in each of us and helps functions including pain control, sleep and mood.

For example, our own data has shown:

• 94% of patients reported an improvement in the severity of their pain

• 77% of patients reported improvement in mental health

• 88% of patients improved in at least component of quality of life

• 59% of patients using opioids reported they stopped all use

• 97% experienced no adverse effects

See our section on Medical Cannabis for more information and data.

References quoted: Leva Clinic has a number of proprietary data sources, including working with researchers from Imperial College London and participates in research with Project Twenty21, Drug Science.

Your consultant will make sure that you start on a concentration and dose/titration of Medical Cannabis that does not make you feel high.

They'll start you on a low dosing schedule, like you might have seen on other medications. For example "0.1ml twice daily, increase by 0.1ml every 3 days up to 0.5ml maximum".

From there you are in full control of how quickly you increase up to the maximum daily dose.

It's important you follow this schedule intuitively. If you were to feel any side-effects you can contact us immediately.

Any side effects of medical cannabis are more likely to occur when your treatment first starts.

In most cases the side effects are quite mild and wear off within a few days. It's important to document these and share any concerns with your consultant.

Here's a list of typical side effects:

Very common (affecting more than 1 in 10 people)

• Feeling dizzy or tired.

Common (affecting less than 1 in 10 people)

• Feeling depressed or confused.

• Feeling over excited or losing touch with reality.

• Problems with your memory or having trouble concentrating.

• Feeling sleepy or giddy.

• Blurred vision.

• Eating more or less than usual.

• Changed sense of taste or a dry mouth.

• Constipation or diarrhoea.

• Feeling or being sick.

• Lack of energy or feeling weak or generally unwell.

• Feeling abnormal or drunk.

• Loss of balance or falling over.

Uncommon (affecting less than 1 in 100 people)

• Seeing or hearing things that are not there (hallucinations).

• Believing ideas that are not true.

• Feeling that other people are against you.

• Thoughts of suicide.

• Fainting.

• Changes in pulse rate, heart rate or blood pressure.

• Tummy pain

Medical cannabis may produce undesirable effects such as dizziness and drowsiness. These effects might impair your judgement or performance of skilled tasks. Note that this is the same as with any medication, including painkillers like opioids. Please refer to gov.uk's section on drugs and driving: the law.

If you're experiencing any significant effects such as dizziness or drowsiness you should not drive, operate machinery or engage in any hazardous activity.