Is Unverricht-Lundborg Disease contagious?

Unverricht-Lundborg disease is not contagious and cannot be spread from person to person through touch, air, or any form of social contact. It is a rare, inherited genetic disorder, meaning it is caused by mutations in a person's DNA and is present from birth, posing absolutely no risk to family, friends, or caregivers.

What causes Unverricht-Lundborg disease?

Unverricht-Lundborg disease, also known as EPM1, is a type of progressive myoclonic epilepsy caused by mutations in the CSTB gene. This gene provides instructions for making a protein called cystatin B. When this gene is mutated, the brain becomes hypersensitive to external stimuli, leading to the characteristic muscle jerks (myoclonus) and seizures that define Unverricht-Lundborg disease. Because it is a genetic condition, it cannot be "caught" or transmitted like a virus or bacteria.

Why is there confusion regarding contagion?

Because Unverricht-Lundborg disease involves involuntary movements and seizures, individuals unfamiliar with neurological disorders may mistakenly fear that these symptoms are infectious. This stigma is entirely unfounded. You cannot contract Unverricht-Lundborg disease through:

• Physical contact or hugging


• Sharing food, water, or living spaces


• Exposure to a seizure or myoclonic jerk


• Being in the same room as an affected individual

Are there environmental triggers?

While Unverricht-Lundborg disease is not caused by the environment, certain factors can trigger symptoms in those who already have the condition. These triggers include:

• Photic stimulation: Bright, flashing, or flickering lights can trigger seizures.


• Stress: Emotional or physical stress can increase the frequency of myoclonic jerks.


• Sleep deprivation: Lack of rest is a known factor that lowers the seizure threshold in Unverricht-Lundborg disease.

Next steps

• Consult a neurologist specializing in epilepsy or metabolic disorders for personalized management.


• Connect with the 19 members of the DiseaseMaps.org community to share experiences and reduce feelings of isolation.


• Educate family and friends using reliable resources to combat social stigma.


• Visit the International League Against Epilepsy (ILAE) website for the latest research updates.

Medical Disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment.

References

• NIH Genetic and Rare Diseases Information Center (GARD): Unverricht-Lundborg disease.


• Orphanet: EPM1 (Unverricht-Lundborg disease).


• OMIM (Online Mendelian Inheritance in Man): Entry #254800 (Unverricht-Lundborg disease).


• Epilepsy Foundation: Information on Progressive Myoclonic Epilepsies.