Neuromuscular diseases
A severe type of epilepsy that begins in early childhood. Several types of seizures, developmental delay and a typical EEG finding are seen.
Not part of the panel of Türkiye's National Newborn Screening Programme (heel-prick test). Source
Orphanet has a guideline for emergency doctors for this disease (language: French, Italian). See on Orphanet
This page is translated from the Turkish original.
This disease is followed through the “Neuromuscular diseases” group.
In this syndrome, the brain produces frequent seizures of different types. Seizures usually begin between the ages of 3 and 5. Many children have learning and developmental problems. The causes vary: brain injury, a problem with brain development, an infection or a gene change. Some children first have West syndrome.
The types and frequency of seizures vary from person to person.
Three findings are looked for in the diagnosis. These are more than one type of seizure, a typical EEG finding and learning difficulties. EEG is a test that measures brain waves. An MRI is done, and a genetic test may also be done. Not all findings may be present at the start.
It is often hard to stop the seizures completely. Epilepsy medicines are the first step; most people take more than one medicine. There are approved medicines specific to this disease. The ketogenic diet may reduce seizures in some people. A small nerve-stimulating device placed in the chest may help. For severe drop seizures, brain surgery may be considered. The doctor who follows the disease decides which treatment is suitable.
Most cases occur without anyone else in the family being affected. If there is a gene change, it has usually arisen new in the child. Sometimes it is part of an inherited disease such as tuberous sclerosis. In some families, other types of epilepsy are also seen. Genetic counselling can be useful for understanding the cause.
Source: MedlinePlus Genetics: Lennox-Gastaut syndrome · NORD: Lennox-Gastaut Syndrome · Orphanet: Lennox-Gastaut syndrome (ORPHA:2382)
These facts are taken from Orphanet and MedlinePlus records (last checked: October 7, 2026). Frequency values are approximate ranges.
Non-profit patient and family organizations in Türkiye working on this disease or disease group. Links are for information; Doktorclub is not affiliated with these organizations and does not endorse them.
We could not find a patient association specific to this disease.
For all rare diseases: Nadir Hastalıklar Federasyonu
Doktorclub does not diagnose, recommend treatments or refer you to hospitals or doctors. These pages are meant to help you talk with your doctor.
GlobalResearch and clinical trials
The phase 3 trial included 270 people aged 2 to 55 years, and half received the drug and half received placebo.
A clinical trial is a regulated study that tests whether a new treatment is safe and whether it works, in patients who volunteer. Most trials look for a certain age, genetic change and health condition. Taking part is voluntary.
Questions you can ask your doctor
ClinicalTrials.gov lists 12 active interventional studies for this disease. 4 are recruiting now; none has a site in Türkiye. Last checked: October 7, 2026.
Selected records (studies with a site in Türkiye first):
Late stage: the effect is being compared in a large group · Phase 3 · investigational (experimental)RecruitingNCT05066217
Middle stage: the effect is being tested in a small group · Phase 2 · investigational (experimental)RecruitingNCT06401538
Late stage: the effect is being compared in a large group · Phase 3 · investigational (experimental)RecruitingNCT05219617
Middle stage: the effect is being tested in a small group · Phase 2 · investigational (experimental)Active, not recruitingNCT05339126
Middle stage: the effect is being tested in a small group · Phase 1 / Phase 2 · investigational (experimental)Not yet recruitingNCT06738732
See all studies on ClinicalTrials.gov · Joining clinical trials
InternationalResearch and clinical trials
The HIMALAYA study, published in The Lancet Neurology, examined an experimental drug in patients with ALS (amyotrophic lateral sclerosis).
TürkiyeResearch and clinical trials
A multicenter study in Istanbul compared patients with Guillain-Barré syndrome.
USANew treatments and approvals
The US Food and Drug Administration (FDA) approved levacetylleucine for balance and walking problems in ataxia-telangiectasia (A-T).
These codes identify the disease in international classifications and databases. They can help when you talk with your doctor or look for reliable sources.
Orphanet code: ORPHA:2382 · ICD-11 8A62.1
Codes checked against WHO ICD-11 and Orphanet on October 7, 2026.
This page provides general information and does not replace diagnosis or treatment. Talk to your doctor about symptoms, diagnosis and treatment.