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Why I Won’t Stop Talking About Epilepsy…

It’s that time again, friends – I don’t mean the Holidays, but something just as special and important – Epilepsy Awareness Month! While Jack does not have complete seizure control, he is able to go very long periods of time without having an episode thanks to his special metabolic diet that is very similar to the one that individuals with PKU and GA-1 are required to follow. These diets are low-protein and pretty grueling for little kiddos (and their parents). While seizure control is not a daily battle we face, epilepsy still runs pretty much every aspect of our lives. I don’t say this in a scary way because I am beyond grateful to have a treatment for Jack’s rare disorder, known as Pyridoxine Dependent Epilepsy. I say it because it is true. I have to calculate every inch of Jack’s day because he can only have 19 grams of protein per day, in addition to his special Lysine & Tryptophan-free formula that he receives via Gtube. Epilepsy means daily frustration of getting a low-protein diet perfect so that my son’s brain can function appropriately. Unfortunately, the etiology of his epilepsy was not discovered until damage had been done to Jack’s brain. It was, however, discovered in time to save his life. This is one of the reasons I will always talk about epilepsy, and especially during the month of November. A diagnosis and a hopefully a treatment, a community and connections that pull you out of dark places, and persistent/fierce advocacy: These are the reasons why I will never stop talking about epilepsy.

I will never stop talking about epilepsy because my words could help others find a diagnosis, treatment, therapy, or something (freaking anything) that helps improve quality of life. Prior to Jack’s birth, I knew nothing about epilepsy. Additionally and shamefully, I would have likely dipped out of any conversation about epilepsy because it’s not a pretty topic. I have seen people shy away from topics so many times because they are messy and ugly – I am absolutely guilty of this so now I talk about epilepsy any chance I get. So many people, 1 in 26, live with epilepsy so destigmatizing [by talking about] this topic is one of the best ways to spread awareness and combat fear. One of the worst parts of telling family, friends, strangers or a new acquaintance that your child has epilepsy is getting the sympathy and “I’m sorry” looks. (Me internally: “Don’t be sorry, be aware!”) Be an advocate for those living with epilepsy by being open to hearing and having conversations about seizures and then using your knowledge to continue spreading awareness and advocating wherever you can. I recently attended an event where the mother of a child with a rare disease (that involves epilepsy) was speaking about how she wanted a gene therapy to help her child be “normal” and so her child could live a “normal” life. This did not sit well with me because that’s not what I want for Jack. Of course, I would love a gene therapy for his disorder; not to make him “normal,” but to give him the best possible quality of life. This leads right into the next reason I will always talk about epilepsy: community and connection!

If you’re reading this then you likely know me online or in real life (maybe both!), but if not the biggest thing for each of you to know if that you can ALWAYS send families to me – struggling with epilepsy, rare disease, inborn errors of metabolism, etc.- I will always share my contacts and try to help any person or family struggling with an epilepsy battle or beyond. I will show up and will do anything I can to help. Ask around if you need references ;). The online support for epilepsy has grown so much over the past 3.5-years since Jack was born and it’s so nice to see the conversations, support, and awareness we all spread daily just by sharing our stories. If you are new to the unwanted world of epilepsy, then let me welcome you wholeheartedly because we are THE MOST supportive and fierce family who will stand by your side. If you don’t where to start, just begin by sharing your story and following some other families in similar situations…just slowly start to connect. I wasn’t ready to connect for a long time and it’s also okay to sit back and watch until you’re ready to connect and share. An important note and another reason I will always share Jack’s epilepsy journey is for advocacy.

One of the biggest battles those affected by epilepsy face is that of getting the correct diagnosis causing their epilepsy AND obtaining the proper drugs that treat their specific epilepsy. While there are very common and easily obtained anti-epilepsy drugs, there are also medications like CBD oil (or even ACTH for infantile spasms can be difficult to obtain in many countries) that many patients and families cannot obtain. Do our Policymakers know about epilepsy? How can they make informed decisions on these drugs or policies that affect those living with epilepsy without speaking to patients? Policymakers are not going to track us down and ask for our opinions so it’s up to us to advocate for policies that will benefit those facing serious battles like epilepsy and rare disease. I will always do this – starting with talking about epilepsy, sharing Jack’s journey, and continuing to help anyone who reaches out to me.

I have been shamed for speaking about epilepsy, sharing videos, and not keeping my battles more under wraps. If these things offend you, then please don’t come here because I will always share openly and honestly. I encourage you to share your story in YOUR style, whatever this means to you. Share photos of your child or don’t, share all the grueling details or hold them back, share and hold on to whatever you want because there us one way & no right way to do this, my friends! ❤

Reach out anytime you need anything – @metabolic_mama on Instagram or DM me for the digits! 💜💜💜

XOXO,

Leah

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