On Becoming an Epilepsy Advocate
Years ago, when we were just starting on our journey with PCDH19, someone suggested that I work to raise awareness about epilepsy and Alyssa’s condition. At that point in my life, I was pretty mad at the world and I found suggestion that I become an advocate infuriating. I was fully aware of how this disorder was destroying our lives and stealing my child. I saw no point in making others more aware of our tragedy. More people clicking like on a Facebook photo wouldn’t save my little girl and I honestly didn’t see how it would benefit our lives.
I found the Alliance website and Facebook group the day after we got the phone call with Alyssa’s diagnosis of PCDH19. I held back at first though because I didn’t want to be a member of this club. A month later we were back in our doctor’s office to find out what all these strange letters really meant. The appointment was devastating. I walked out of her office without an ounce of hope and melted down in the lobby. When I finally composed myself enough to type, I posted a message in the Alliance Facebook group. Immediately parents from around the globe were with me in that hospital offering a virtual shoulder to cry on and a glimmer of hope. That day I understood the power of our community and what the Alliance does for parents.
As time went by, I noticed that when Alyssa wasn’t in a seizure cluster people assumed our lives had returned to normal. No one seemed to understand that the seizures and meds caused lasting damage or that the disorder itself causes behavioral and cognitive issues. I had to fight for her to get the education she deserved and the therapies she needed. I couldn’t count the number of times people assumed this was something she would just grow out of or that could be fixed with a pill. It was such a relief when the Alliance sent us a package of Ladybug cards. We shared them when people who acted judgmentally towards us or wanted more information about our fight. I started to understand how more awareness of her condition could benefit Alyssa and our family.
This summer, Alyssa and I flew to San Francisco for the PCDH19 Symposium. We met with researchers from all around the world. They spoke about the amazing strides they have made in understanding this disorder and finding a cure. These scientists have started to untangle the genetic workings of PCDH19, the typical course of the disorder and possible treatments. These amazing researchers are devoting their careers to a rare disease. They are able to do that because of the financial support they receive from the PCDH19 Alliance. I also learned that genetic testing for the cause of epilepsy is still rare. This is devastating because we now believe as many as one in ten girls who have seizures before the age of three may have PCDH19. That means that thousands of children are not being tested for this disorder and they may not be getting the best treatment. I started to understand how raising funds is making a real difference for Alyssa and children like her.
I also learned that genetic testing for the cause of epilepsy is still rare. This is devastating because we now believe as many as one in ten girls who have seizures before the age of three may have PCDH19. That means that thousands of children are not being tested for this disorder and they may not be getting the best treatment.
About a year after Alyssa’s diagnosis, I posted a blog about the changes in our lives and I’ve been writing since. It took me a while to understand why it matters that other people know our story. It matters because some doctors still don’t know to order the testing kids need so they get the right treatment. It matters because the research being done today is getting us closer to a cure and the possibility of a normal life for my daughter. That won’t matter if there isn’t funding to continue supporting the scientists though. It matters because somewhere out there is a mama melting down in a hospital room. She needs a community of people who know exactly what she’s going through and can offer her hope at her lowest point. When I understood that, I become an advocate for epilepsy awareness because it matters to kids like Alyssa. Now I blog and I reach out to other parents. This month I will even be asking for donations because I finally understand that it matters.