At just two and a half years old, Hamburg resident Lorraine Ramirez-Muller’s oldest daughter was diagnosed with epilepsy. Since the diagnosis, Ramirez-Muller has been researching and learning about the chronic disorder and is helping other families who are affected by the life altering condition as well as spreading awareness.
Perhaps one of the biggest times of year to help spread awareness and support is during November which is National Epilepsy Awareness Month. In recognition of the month, many businesses “go purple” as well as organizations and individuals. It is a way to show that those who are affected by the disorder are not alone.
According to the Epilepsy Foundation, “Epilepsy is a chronic disorder defined by recurrent, unprovoked seizures. Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well.” The life altering condition affects an estimated 2.3 million Americans and more than 110,000 residents of eastern Pennsylvania. There is no cure and in more than half of the cases the cause of the epilepsy is unknown and one third of the people with epilepsy have uncontrolled seizures because no medication or surgery will work.
Like Ramirez-Muller’s now 15-year-old daughter, 300,000 children under the age of 15 are diagnosed with epilepsy.
“It is heart wrenching,” said Ramirez-Muller on watching her daughter suffer a seizure. “When she was first diagnosed we didn’t know where to turn. We didn’t know to ask for second opinions with treatment.”
Like most parents, she turned to research and throughout the years learned about many resources that she did not know about that were available. Ramirez-Muller talked about how the generic brand medications used to treat her daughter would cause side effects and how she learned that some of those effects could be prevented by using the brand name.
It is having discovered little bits of information like that which led her to become a parent-to-parent peer supporter through the Epilepsy Foundation. She admits that she does not know everything, but being able to just listen and share familiar stories with other parents who are at the beginning of the diagnosis can be a big help.
By educating others on the condition it helps fight the stigma. In the beginning, it was difficult for Ramirez-Muller’s daughter to feel comfortable speaking about having epilepsy to even her closet friends and could lead to some disappointing experiences when it came time to sleepovers and other usual adventures children take in while growing up.
It wasn’t until she was about 10 or 11 that her daughter came back from Camp Frog, an integrated camp for children with epilepsy and those without, that her daughter felt more comfortable talking about having epilepsy and sharing with close friends and then her bigger group of friends.
With Ramirez-Muller and her daughter being open to talking about the effects of epilepsy, both have been approached by peers seeking some guidance.
“For me, that’s huge. Just because I mentioned it on Facebook and someone remembered it,” said Ramirez-Muller on a friend contacting her about their baby having seizures. Her daughter has also been approached by friends who had questions.
The family has participated in fundraisers for epilepsy including the National Walk for Epilepsy in Washington, D.C. Ramirez-Muller remembers her young daughter’s reaction when she noticed all of the other people who were wearing purple shirts (those who have epilepsy) at one of the walks and how it helped show her that she is not alone. They have also been to a similar walk in Harrisburg and would love to see something like it in Berks County.
“It’s the most amazing feeling being there,” she said and added that she makes sure to walk the finish line with her daughter.
Recently, Ramirez-Muller was asked to be part of a brand new state-funded program called LEAP (Local Epilepsy Awareness Project) in which two parents were picked from each county to be a parent facilitator to help find where there are gaps and address concerns and recommendations.
“I was beyond myself,” she said. “It was just amazing. It was the coolest thing that I got to talk to other parents.”
Even with all of the success in spreading awareness and support, Ramirez-Muller still has to see the effects that epilepsy has on her daughter and others. She is making it a mission to “go purple” and help in any way that she can.
“She’s brave,” Ramirez-Muller said of her daughter. “As a mom, you want them to achieve and be happy with who she is.”
The Epilepsy Foundation issued a 30 day challenge for the month of November with easy tasks that can help spread awareness, support and educate using social media sites. For more on epilepsy and how you can help by “going purple,” visit www.efepa.org.