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Parents warn of epilepsy sudden death



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October 30, 2013 - BY ANDREA M. BEAUDOIN

Clarkston News Staff Writer

Katherine "Katie" Woloson was experiencing the best years of her life. Katie was young, just 27 and living in Maryland. She was fearless, generous, adventurous, motivated and determined.

Katie was a "jet setter" her parents Henry and Diane said, and was well traveled with visits to Australia, Spain, Italy, England, Morocco, Ireland, France, Greece and many US states.

A 2003 graduate of Clarkston High School, after high school Katie attended Michigan State University and graduated in 2007 with an education in Packaging Engineering.

Katie was just a little girl, 5-years-old, when her mom Diane who had worked as an emergency room technician, noticed her little girl was having abnormal tremors.

The family learned what Katie was experiencing was simple partial seizures and doctors diagnosed her with epilepsy. Katie merely had tremors, not full blown seizures, which are what most people think of with epilepsy.

Katie was not alone in when it came to having epilepsy with around 50 million people worldwide afflicted with the condition-three million of those people in the United States.

On Aug. 10, 2013, Katie's parents received a call that changed their lives forever. They were told their daughter died.

"You're prepared for someone in their 80s or 90s to pass away, but you are never prepared for someone young to pass," Katie's dad Henry said.

The Woloson's were shocked because Katie's doctors never informed them of the true dangers that patients with epilepsy face. Katie's cause of death was determined to be Sudden Unexpected Death in Epilepsy (SUDEP), similar to Sudden Infant Death Syndrome.

"They never told us Katie was at risk for SUDEP," said Henry.

Although SUDEP is known in the medical community, little is understood about why it occurs.

Henry began researching SUDEP, spoke with medical professionals and learned statistics that doctors are reluctant to tell their patients.

"We were also told by a doctor that patients are not told of the risks because it may scare them," Henry said.

Katie's neurologist told the Woloson's a series of small seizures can cause a disruption in the heartbeat and bodily functions. Research points to the tremors and seizures causing a disruption in respiratory and heart functions.

"It doesn't necessarily have to be one grand mal seizure," said Henry. "It's a series of them."

The medical community classifies SUDEP as a rare occurrence, but it happens more often than it is identified.

Henry said epilepsy is one of those illnesses with stigmas attached.

"People don't want to talk about it because people get scared they will have an accident while driving, and be prohibited from certain things," he said. "It's a shadow illness and people don't want to talk about it because they don't want to lose driving privileges."

Henry said Katie's dreamed of flying aircraft, but because of epilepsy those dreams were dashed.

Henry said they were not informed of the alarming statistics.

If a patient is doing everything right and taking medication properly, they have a 1 in 1000 chance of SUDEP death. However, with many medications a patient can experience a dulling effect that makes them feel lethargic and slow.

For whatever reason if a patient quits taking their medication, the risk of sudden death increases dramatically to 1 in 150.

"A vast majority of people are living normal day to day lives, unaware that sudden death from SUDEP could be right around the corner," Henry said.

Henry said SUDEP deaths are often identified by coroners as other causes, and people must be informed of the risks associated with epilepsy.

If the Woloson's had known the risks, different precautions would have been put in place.

"The mind is an incredibly complex device and people need to know that the illness can progress quickly from small tremors to full blown seizures. Ask if you are taking the most current medications and are taking advantage of the latest treatments," he said.

Medical professionals are finding American troops are returning home from overseas and being diagnosed with epilepsy – the condition may be connected to exposure to explosive trauma.

Henry has vowed to increase awareness of SUDEP by embarking on a mission to encourage Michigan coroners to better detect and identify SUDEP deaths.

"We are trying to do the right thing and increase awareness," Henry said. "Otherwise we do not know how many people we are losing from SUDEP and if more deaths are properly identified than more funding will be made available."

Henry also wants families to know that SUDEP could happen to someone you love.

"We want other people to know the risks and not be totally blindsided by SUDEP," he said.

Now the family will forever wonder if they could have done more to prevent SUDEP.

"People also need to know that just because they only have small tremors it does not mean it can't escalate to grand mal seizures," he explained.

Be informed about any illness you face.

"If a person or your child is not acting normally have it checked out because this could happen to someone you love," Henry said.

He added that it's important for all people to take care of themselves-not just those with epilepsy. "

"Take care of yourself," Henry insists.

He added if you find out you or a loved one are facing an illness find out as much as you can about it and ask how far it can escalate.

"Learn what you can, and be proactive," he said. "Learn the signs and how risks can be reduced."

Henry said the support his family received when Katie died was heartwarming and appreciated. "We received great support from family, friends and the community," he said, adding support continued to pour in at community events.

"In lieu of flowers we asked for donations to the Epilepsy Foundation," he said. The family received $6,000 in donations to give to Camp Discovery, a special camp for kids.

In honor of Katie, the Woloson's created a scholarship fund at MSU for students pursuing an education in Packaging Engineering in an abroad program, the same thing Kate went to school for.

For more information on epilepsy visit www.epilepsymichigan.org for more information on SUDEP visit www.makingsenseofsudep.org

Staff writer
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