Purple Day takes place annually on March 26 as an international effort to spread awareness and resources about epilepsy. It’s a tradition to wear purple on Purple Day because lavenders are the representative flower of epilepsy. While epilepsy is not rare, there are many rare causes of epilepsy.
On Purple Day, learn crucial information about rare epilepsies:
Rare epilepsies may be medically complex, making diagnosis difficult. Many Rare Epilepsies are even missed and misdiagnosed, so getting the correct diagnosis may take a long time. Therefore, the rare epilepsy diagnosis process is often described as the “diagnostic odyssey.” Learn more about the “diagnostic odyssey” here.
50% of people with epilepsy do not know the cause of their epilepsy. Knowing the cause can help people find treatment, information and support.
Most epilepsy is treated with anti-seizure medications. Other treatments include: diets, surgery, and medical devices. Precision therapy is on the horizon for multiple rare epilepsies. Precision therapies involve personalized treatments for patients using their genetic makeup. New precision therapies are being developed for rare epilepsies using gene therapy and other innovative strategies. Learn more about seizure and epilepsy medicines here, dietary therapies here, and epilepsy surgeries here.
Conditions that are often associated with epilepsy may include cognitive concerns like memory or learning disabilities, developmental delays, psychiatric concerns (including depression, anxiety, and Autism Spectrum disorders), behavioral concerns, and medical concerns (like language, mobility, sleep, respiratory system disorders, gastrointestinal and digestive disorders, and migraines). Therefore, treatment of the person as a whole rather than solely focusing on epilepsy is crucial because these conditions can be very serious. Learn more about rare epilepsy associated conditions here.
There are many different forms of seizures associated with rare epilepsies and patients can have different forms. Therefore, it is important to know which seizures patients are having so their treatment is effective. Learn more about the types of seizures here.
Learn more about rare epilepsies:
Visit the Purple Day Website here
Find your Rare Epilepsy Community
If you are diagnosed with a rare epilepsy, visit Rare Epilepsy Network’s 80+ members to find diagnosis specific information, education, support, and community.
If you are aware of other valued resources or to provide updates or correct errors, please contact: info@rareepilepsynetwork.org.
Disclaimer: All resources are provided as a courtesy. We are not endorsing any organizations or providing medical advice.