Epilepsy

Epilepsy

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7 days ago by Anonymous Watermelon

”But you don’t look sick”.
”But you don’t look sick”. Maybe I don’t, and that’s both to my advantage and disadvantage. People don’t perceive me as ”sick” and treat me as a normal-functioning person. However, they don’t see everything that’s going on on the inside, therefore they treat me as if nothing is wrong. How could they know? I don’t just go and shout from rooftops that I have epilepsy. Many wouldn’t know what that means and treat me like an alien. But I’m sick and that’s facto. For me and many others, epilepsy is an invisible disability. It’s not always obvious that a person has the condition unless they have a seizure - pretty much the definition of my case.
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Epilepsy
Hi how can I live with people
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AW

6 months ago by Anonymous Watermelon

March . Epilepsy Awareness Month .
We starter "celebrating" early this morning. Just past 12am i wake up to my 13 month old violently convulsing. I sit there watching the clock sleep deprived having to decide if we need to administer rescue medication or call 911 or if its a "easy night" and the seizure will stop on its own. Rescue meds tonight. Again. Ive watched my daughter have hundreds of seizures. Less than 24 hours old, i held my baby as she had her first known seizure. Leah is 1 in 26. She has epilepsy. After hundreds or tests in her first 48 hours or life doctors determined it was likely genetic and we received the diagnosis of Infantile Epileptic Encephalopathy while we waited for genetics. A month later we brought her home and found out she had de novo (not inherited) KCNQ2. Which often causes hard to control seizures. Just shy of 4 months, Leah received a second diagnosis of Infantile Spasms. Another form of epilepsy. Today, Leah has around 6 seizure types. After countless medications, diets and random treatment drs have determined she has refractory epilepsy meaning drugs resistant. Her EEG (last one she had) is very abnormal and chaotic and at night still had hypsarrhythmia which makes development very slow and hard. Ive thought my daughter has died more times than id like to admit. Ive laid awake watching her sleep waiting for seizures or to make sure shes still breathing. No its not first time parent paranoia its the realities of epilepsy. Today is our second year knowing about and participating in Epilepsy Awareness Day and we FOREVER will 💜
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Symptoms
What are the symptoms of epilepsy? And are they strong or weak symptoms, I am really curious
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Epilepsy an cause death
I’ve seen far far FAR too many little ones lose their lives in the past 6 months to not comment on the fact it’s not taken seriously enough. It’s taken seriously WHEN we lose someone, but others don’t take it seriously BEFORE that happens. A lot of us are walking that line on the daily, but we still get patronized because “it’s not visible” or “it’s only a seizure.” That narrative changes once we lose someone doesn’t it?
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