OUR DAUGHTER HAS DRAVET SYNDROME

OUR DAUGHTER HAS DRAVET SYNDROME

I remember it like it was yesterday. In was a breezy day in May. The sun was shining and the kids were anxious were to get back outside as we sat in the doctor’s office waiting for the dreaded diagnosis. “Skye has Dravet Syndrome.” Those four words knocked me off my feet, and I still …

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TOURETTE’S SYNDROME AND SCHOOL: WHAT TO EXPECT AND HOW TO COPE

TOURETTE’S SYNDROME AND SCHOOL

When your child has Tourette’s Syndrome(TS), life at school can be a challenge. From feelings of embarrassment, struggles with workload, and instances of bullying, school can be a scary place for both you and your child. Establishing good communication, mutual respect, and an overall understanding of the disorder between educators, peers, and your child will …

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MANAGING DAILY LIFE WITH EPILEPSY

MANAGING DAILY LIFE WITH EPILEPSY

For most people, the most frustrating component of an epilepsy diagnosis is its unpredictability. Anxiety and stress levels that are a part of daily life without epilepsy suddenly reach new heights when the fear of seizures and potential falls are added to the mix. Though epilepsy doesn’t have to have an effect on all of …

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MY CHILD HAS TOURETTE’S SYNDROME

MY CHILD HAS TOURETTE’S SYNDROME

Tourette’s Syndrome(TS) is characterized by involuntary vocal and motor tics. It is estimated that as many as 200,000 Americans suffer from the most severe form of Tourette’s Syndrome, and as many as one in 100 display symptoms of milder cases. Facial grimacing, head jerks and twists, hopping, and jumping or bending are all examples of …

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WHAT IS EPILEPSY?

WHAT IS EPILEPSY?

There are over 3 million people living with epilepsy in the United States. Each year in the U.S., there are approximately 150,000 new epilepsy diagnoses. It affects people of all ages and is the fourth most common neurological disorder. So, just what exactly is epilepsy? Epilepsy is a disease associated with repeated, unprovoked seizures. Unprovoked …

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WHAT HAPPENS DURING A SEIZURE?

SEIZURE

No two seizures are exactly alike. They can take on different forms, and affect people in distinct ways. While not everyone will experience every stage, seizures do have a beginning, middle, and end point. There may also be common symptoms that those who suffer from seizures experience at each stage of a seizure. So, what …

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“MOM, WHY DO I HAVE EPILEPSY?”

EPILEPSY

Epilepsy affects around 300,000 children ages 14 and under in the U.S. Every child is affected in different ways. Some children receive childhood treatment for their epilepsy, taper off of medication at some point, and remain seizure-free for many years. Others may have certain, severe forms of epilepsy that may require lifelong treatment. Most childhood …

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COPING WITH DUCHENNE MUSCULAR DYSTROPHY (DMD)

COPING WITH DUCHENNE MUSCULAR DYSTROPHY (DMD)

Duchenne muscular dystrophy or DMD is one of the nine types of muscular dystrophy. DMD is characterized by progressive muscle degeneration and weakness. DMD effects nearly 1 in every 3,500 boys, and is primarily detected during childhood. Understanding the disease is the first step in coping with it. As a parent, it can be challenging to deal with the …

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MUSCULAR DYSTROPHY: A NEW OPTION

MUSCULAR DYSTROPHY

“The freedom to walk, to talk, to run and play. To laugh, to hug. To eat. To breathe.” When browsing through the MDA (Muscular Dystrophy Association) website, it can be difficult not to become a little sad. An image of a balloon where a boy wrote “I want to have better muscles” catches my eye, …

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