Interview with Eva Schoeters, founder be-TSC
Tuberous Sclerosis Complex (TSC), also known as Bourneville's disease, is a complex genetic disease of which epilepsy is often one of the symptoms. Clear communication around TSC and tight monitoring of it is crucial to limiting the impact of the condition. That is why Eva has committed herself to the role of chairman of be-TSC, an association that wants to be there for those who have to deal with TSC. In this blog, she tells more about TSC and shares her story.
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Topics:
absence,
epilepsy,
uncertainty,
impact on family,
support,
living with epilepsy,
familiy,
support group,
awareness,
spasms,
tsc,
Tuberous sclerosis,
infantile spasms,
rare diseases
Epihunter is used by children, young people, and adults. In this interview, we meet Philippe (52) from Antwerp, Belgium. He has been using epihunter for some time and shares his story with us - from his first seizure to his new daily approach and the lessons of his epilepsy.
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Topics:
absence,
testimonials,
seizure,
uncertainty,
unpredictable,
neurologist,
diagnosis,
self-care,
self-awareness,
living with epilepsy,
epihunter,
apps
Interview with Stefanie De Jonghe
Childhood epilepsy has a huge impact on daily family life. It also challenges your feelings as a parent. Stefanie De Jonghe, chairperson of Steunpunt Kinderepilepsie - a Flemish non-profit organisation focused on childhood epilepsy - knows what she’s talking about. Six years ago her daughter, Lenie, was diagnosed with a severe form of epilepsy. Stefanie gives us an honest and touching account of her daily family life and tells us more about the Steunpunt Kinderepilepsie’s mission and activities.
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Topics:
absence,
epilepsy,
unsteady agenda,
uncertainty,
impact on family,
support,
living with epilepsy,
familiy,
support group,
awareness
Absence epilepsy affects everyday life on every level. Though many of us try to meet it with optimism, there is always that fear and anxiety. You make the most of every day, but never without precautions and a solid portion of routines. Below you can read how some parents approach the uncertainty that comes with absence seizures.
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Topics:
absence,
future,
life questions,
unsteady agenda,
uncertainty,
unpredictable,
impact on family
As a big brother, Frederik can cope with Ine’s epilepsy. He is very responsible and caring. If the family goes on a trip, he is the one who asks: "Mom, did you not forget Ines pills?" - "As if that’s the concern of a thirteen-year-old" - sighs his mother, Karen.
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Topics:
absence,
seizure,
children,
future,
life questions,
unsteady agenda,
uncertainty,
unpredictable,
impact on family
