Epilepsy is a range of seizure disorders that carry a frightening and confusing burden for those with the disease. Their seizures can run the gamut from mild to life threatening, while they live with the uncertainty of when a seizure will strike. Major advances are being made giving sufferers more control over their seizures and their lives.
Gaining that control requires trust, trust of the doctors who are prescribing new treatments that must be closely monitored as they can change the rate of seizure occurrence. Patients must also have and trust a personal support system of family, friends, co-workers, and physicians. These supporters understand the huge impact of having a seizure, and create a supportive network around the epilepsy patient, striving to give them normalcy in their lives and to remove the stigma caused by the misperceptions that exist around this disease.
“My daughter, Lauren, is a beautiful young woman who lights up a room with her smile and personality, despite the impact epilepsy has had on her life.
At the age of 7 months she began having uncontrollable seizures. Why? We may never know.
It’s impossible to describe that day—when hers and my family’s lives changed forever—that day when I found her lying blue and limp in her crib after what I soon learned was a night filled with seizures.
I can’t aptly describe what it was like to watch her tiny body go rigid and convulse, her beautiful blue eyes roll back in her head, and saliva froth from her mouth . . . over and over again. Sometimes more than 25 times a day.
It angers and saddens me to reflect back on the over 20 different drugs and their horrendous side effects that never successfully controlled her seizures. Countless hospitalizations, barbaric procedures, special diets and therapies came to define her life.
And then there was the cognitive deterioration that we witnessed before our very eyes, as the seizures wreaked havoc on her developing brain.
It’s hard for me to describe Lauren as ‘lucky’, but in the year 2000, she defied all odds and finally responded to a new medication that stopped her seizures. She is not cured, still takes 3 daily medications and nobody knows how long this may last, but she has now lived 15 seizure-free years.
The damage from the seizures is irreversible, and she will never live independently. However, freedom from seizures and debilitating side-effects, and the ability to live without constant fear of when the next seizure will strike, have improved her life in ways we never allowed ourselves to dream of the first 18 years of her life.
Three million Americans are affected; many of them children; many severely impacted. It’s unacceptable that today, 34 years after my daughter was born, we still don’t have answers for so many.
We must continue this fight on behalf of all children, like Lauren, who lighten up rooms with their smiles.
They deserve much better.”