MINNEAPOLIS, June 3, 2014 /PRNewswire-USNewswire/ -- When 4-year-old Henry Lapham was diagnosed with epilepsy, his parents Gardiner and Nicholas Lapham were devastated, but certain that with the proper care and medication, everything would be fine. Nothing could be further from the truth.
A mere five weeks after Henry's diagnosis, a seizure took his life. He died from a phenomenon called Sudden Unexpected Death in Epilepsy (SUDEP).
One in 26 Americans will develop epilepsy over the course of a lifetime leading to nearly three million Americans now living with epilepsy. For nearly one-third of them, their seizures are uncontrolled by medicine and other common forms of treatment. People who have uncontrolled seizures are at heightened risk for Sudden Unexpected Death in Epilepsy (SUDEP), which takes more lives annually in the United States than Febrile Infection-Related Epilepsy Syndrome (FIRES) and Sudden Infant Death Syndrome (SIDS) combined. A person with epilepsy has a more than 20 times higher rate of sudden death than does the general population.
Gardiner Lapham, who decided to devote herself to finding a cure for the disease that took her son's life, is the co-chair of the Partners Against Mortality in Epilepsy (PAME) Conference on June 19-22 in Minneapolis. Lapham, who is the board chair of Citizens United for Research in Epilepsy (CURE), will represent just one of the more than a dozen epilepsy organizations who will be taking part in the four day event.
"Epilepsy mortality presents a significant and untold toll on public health, Lapham said. "For me, this meeting is tangible evidence of the progress that is being made in this field. As importantly, it represents hope that one day families will not have to suffer the pain and despair of losing a loved one to epilepsy. "
For the three million Americans living with epilepsy, about one third live with uncontrolled seizures. Each year SUDEP kills more people than FIRE, or SIDS making a SUDEP death a possible reality for many people with epilepsy. Yet, many people with epilepsy and their families have never heard of it. While people with epilepsy say they want information on SUDEP, many doctors rarely talk about it.
"There is a growing need for communications between researchers, clinicians, families and the public in order to identify approaches which may be useful to all people involved in caring for someone with epilepsy," said Elson So, president, American Epilepsy Society. "The goal of this conference is to build cross-fertilization of information so that clinical interactions can be better informed by patients and families and so that clinicians can better recognize risk factors and involve families in timely discussions of these risks."
This second-annual PAME Conference unites scientists, clinicians, people living with epilepsy, bereaved family members and epilepsy advocates from around the world to foster knowledge, heighten awareness and hasten action around epilepsy mortality broadly and SUDEP specifically.
The PAME Conference will be held June 19-22 at the Hyatt Regency Minneapolis. To learn more visit aesnet.org/pame.