When cannabis changes lives: Sophie's inspiring fight against epilepsy

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The story of Sophie Voncken: a battle against severe epilepsy

Sophie Voncken, a young Belgian woman born in 2009, suffers from Dravet syndromea rare and severe form of childhood epilepsy. This neurological disorder causes uncontrollable seizures that are resistant to conventional treatments. At her worst, Sophie suffered up to 50 seizures a daywhich put his life in danger. In 2015, after years of failed treatments, his parents turned to a controversial but promising option: the use of cannabinoids. Cannabinoids are active compounds derived from cannabis..

According to them, Sofie Voncken owes her life to the medical marijuana. Since 2015, when she first took cannabinoids, Sophie shouldn't have gone to A&E once! Together withasbl We Are SofieThey have taken the Belgian government to court. The Voncken family has requested the legalisation of thecannabis oil medicinal products before the courts. The application was lodged with the Brussels court. Their experience has opened up the debate on the effectiveness of medical cannabis in the management of epilepsy, but their battle continues.

What is epilepsy and why is it difficult to treat?

L'epilepsy is a chronic neurological disease that causes seizures due to abnormal electrical activity in the brain.

Epilepsy can vary in severity and type of seizure. Severe forms, such as Dravet syndrome and Lennox-Gastaut syndromeThese often require heavy and complex treatment.

These two rare forms of epilepsy account for around 20 % of cases:

Le Lennox-Gastaut syndrome is a disease that generally begins in early childhood. It manifests as tonic seizures marked by uncontrolled muscle contractions. The condition is often associated with learning difficulties and impaired intellectual and motor skills.
Le Dravet syndrome is a rare genetic disorder that appears in young children. Symptoms include convulsions often triggered by fever, hyperactivity, and delays in language and motor development. This disease has a high mortality rate. In some cases, death can occur before the age of 10.

Approximately 30 % of patients with epilepsy do not respond to treatments This is leading families and healthcare professionals to explore other solutions.

The role of cannabinoids in the treatment of epilepsy

What is a cannabinoid?

The cannabinoids are chemical compounds found in hemp, the best known of which are CBD (cannabidiol) and THC (tetrahydrocannabinol). Unlike THC, CBD has no psychotropic effect. In addition to CBD and THC, the cannabis plant contains over a hundred other cannabinoids, such as CBG (cannabigerol) and CBN (cannabinol), which are beginning to be the subject of in-depth research into their potential health effects. These compounds act in synergy, a phenomenon known as the entourage effect. Their effects are reinforced when they come into contact with each other.

How does CBD affect the body?

CBD interacts with the body's endocannabinoid system, a network of receptors involved in regulating essential functions such as pain, mood, appetite and sleep. Studies show that CBD can reduce the frequency and intensity of epileptic seizuresparticularly in patients resistant to conventional treatments.

What cannabis-based medicines are authorised?

Epidiolex® is the first cannabis-based medicine to be legalised in the United States. It is approved in Europe for certain types of epilepsy, but is not available in Belgium. Visit BelgiumThe medical use of cannabis is governed by strict laws. All products containing THC (more than 0.3%) come under narcotics legislation and are illegal. Visit Sativex®, a treatment for multiple sclerosis (MS), is an exception. However, calls for more flexible regulation are multiplying, fuelled by cases like Sophie's.

Non-medical CBD, which is available over the counter at various points of sale, differs from cannabis-based medical treatments. These are prescribed on prescription to patients who are being monitored in specific clinical situations.

Effectiveness of CBD (CBD medication) in treating seizures

Le CBD (here Epidiolex®, the pharmaceutical CBD oil), a non-psychotropic component of cannabis, has been shown to be effective in certain types of refractory epilepsy, including :

A reduction of at least 50 % seizures in 43 % of patients with Dravet syndrome treated.
A reduction of 42 % atonic seizures in patients with Lennox-Gastaut syndrome compared with 17 % with placebo.
Various refractory epilepsies A mean reduction in seizures of 50 % in 52 % of patients in an uncontrolled study.

Conclusion

The story of Sophie Voncken illustrates both the limitations of conventional treatments for epilepsy and the potential of cannabinoids. Medical cannabis offers a glimmer of hope to patients and their families for whom conventional treatments have failed. Although promising, these treatments still require in-depth research and appropriate regulation if they are to be accessible to all patients in need.

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When cannabis changes lives: Sophie's inspiring battle against epilepsy