Cannabis for seizures: Campaign to save Isaac from ’80 seizures a day’

Cannabis for seizures is prescribed extremely rarely in the UK. Baby Isaac Linford, from Hull, suffers from Lujan-Fryn syndrome. His rare condition was diagnosed in November 2020.

Mother, Sarah Sugden, says that “On some days he can be hit with over 80 devastating seizures. This is incredibly distressing for him and exhausting for the family. We are at a breaking point. We simply want the chance to try medical cannabis. It has been life transforming for other children with similar extreme forms of epilepsy.”

Isaac’s condition is too severe to be treated by other antiepileptics, having already tried 13 different conventional drugs.

Cannabis known for help with seizures

At the moment there is one cannabis-based medicine that has been approved for treating epilepsy in the UK, called Epidyolex. It contains pure CBD.

Epidyolex is only recommended as a treatment on the NHS for people with Dravet syndrome and Lennox-Gastaut syndrome. This is because there is good evidence that cannabis for seizures is extremely effective for people with these syndromes.

There is some evidence that Epidyolex may be effective for other types of epilepsy. However, the evidence is not as good as for the syndromes mentioned above.

Doctors refusing to prescribe cannabis for seizures

Cannabis was made legal for medical use in 2018. Due to legislation and stringent rules, even private clinics face a host of issues. This is especially true when trying to give the drug to children.

The NHS currently only prescribes the medication to 3 children in the UK. Sarah has asked for her local MP to get in touch with the Secretary of State on this matter.

Hull MP Karl Turner has now written to Health Secretary Sajid Javid, asking for sensible decisions to be made on the matter. Families all over the UK are being denied access to potentially revolutionary medication.

“It’s just become so political,” said Sarah. “All the while, my chid is suffering. He could die from one of these seizures any day.

Campaign for Isaac

Sarah, 30, organised a GoFundMe to raise cash for treatment in private clinics, and has now set up a petition online which has received over 75,000 signatures at time of writing.

“At the moment, with the way it is, I would have to go abroad to get it, then break the law bringing it back,” the mum added. “The medication could be confiscated and I’d have to explain the situation. It would be incredibly stressful.

“As a mum, I’m going to do anything it takes. We seem to have lost all common sense and the government needs to intervene to say to doctors, ‘it’s okay to prescribe this medication – it’s completely legal’.”