Parent Diary Updates: New! Meet Chelsea Merrill
SAVE THE DATE!
Rounds fore Research Golf Tournament - Sep. 9, 2013
What is Lafora?
Lafora disease, also called Lafora progressive myclonus epilepsy, is a rare, progressive and very degenerative form of epilepsy that usually presents in the late stages of childhood and early adolescence. In most cases, children develop normally for roughly the first ten years of their life. The first symptom to usually manifest is a tonic-clonic grand mal seizure, a seizure that affects the entire body. In some cases, the first symptom may be a seizure induced by flickering light, characterized by staring for 1-10 seconds. These types of seizures are called absence or petit mal seizures which present with momentary loss of responsiveness and a disconnection with the surrounding environment.
Symptoms become increasingly worse within a short period of time and include grand mal and absence seizures, myoclonic jerks, temporary blindness, visual hallucinations, depression, difficulty walking (ataxia), and problems in thinking (dementia).
Lafora usually leads to death within 10 years of onset. Presently, THERE IS NO CURE.
Chelsea’s Hope began in the fall of 2007 as a means to share our story about our daughter Chelsea and her diagnosis of Lafora disease. Feeling helpless, hopeless and alone is our sorrow we began to realize we could no longer continue to live under the black cloud of despair that was Lafora. We connected with the world’s leading experts in Lafora research and soon thereafter, through the power of the internet, began to find other Lafora families and encouraged them to join our cause of creating awareness, connection and raising money for research.