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Epilepsy Blog Relay: Things to know about life as an Lennox-Gastaut Syndrome family

This post was written by Darla Davison, mom to Aaron who has Lennox-Gastaut Syndrome (LGS), a rare and severe type of epilepsy. Living Well With Epilepsy is grateful to Lundbeck, Champion Sponsor of the March 2018 Epilepsy Blog Relay™.

Thrilling, Inspiring, Better together

“This photo was taken just a day or two after the 2016 LGS conference in Denver. We were already on a high from seeing all of our LGS friends, and then we were blessed to see some gorgeous sights.”

Things to know

  •  Families affected by Lennox-Gastaut syndrome (LGS) are “normal” families.

No one expects or deserves something like this to happen to anyone in their family.

 

  • LGS individuals and families will need a lot of support and understanding as they navigate through the ups and downs of daily life.

There will be times when plans need to be changed or rescheduled, often at the last minute. Any progress in an LGS child’s development or improvement in their condition brings much celebration and gratitude. However, setbacks often come, bringing disappointment and discouragement.

 

  • Individuals with LGS are generally happy and content with their lives.

They love their families, friends, and community. They love to laugh and be given your full attention. They don’t feel different from anyone else and enjoy being treated the same.

 

  • You are blessed if you know someone with LGS.

You are privileged to meet someone who is likely stronger and more resilient than you are. We can learn much from individuals and families who experience life with a great amount of difficulty and suffering. They tend to appreciate the simpler things in life and cherish each day with their loved ones.

 

  • The top strengths of the LGS community:

The commitment to fight and advocate for everyone’s loved ones

Resilience to extreme ups and downs

Supportiveness and the instant connection with other LGS families

The March 2018 Epilepsy Blog Relay™ was sponsored by Lundbeck – a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at www.LGSTogether.com and through the LGS Together Facebook page (www.facebook.com/LGSTogether).

 


NEXT UP: Be sure to check out the next post tomorrow by Desiree at https://brainblipjourney.blogspot.com/ For the full schedule of bloggers visit livingwellwithepilepsy.com.

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