MERRY CHRISTMAS…. we will not give up😊
...there are times when children, and also those affected by epilepsy, do not want to know anything about their illness. They don't want to know anything about their parents and are, as they say in Bavaria and Austria, "Zwiderwurzn". (you say [ˈt͡sviːdɐˌvʊʁt͡sn̩] ). And then you have them put on a NightWatch every evening before they go to sleep (“even if it looks pretty chic for a health product” 😉). Well - congratulations! (but please: don’t give up!)
But now it's Christmas time, time for some peaceful and joyful hours, time to relax a bit and say THANK YOU, hopefully. The following story is from me for all committed people in the field of epilepsy (female, male, diverse, etc.) such as those affected by epilepsy, parents, carers, doctors, researchers, health insurance companies, medical device manufacturers, bosses, employees, pharmaceutical companies, advice centers, volunteers, foundations, friends, etc.: You are wonderful and great - thanks to you, help and support, progress happens every day and sometimes small and big miracles happen (which we all need).
When Elen came into the world, she was at first sight a healthy baby. However, in her fifth month, she suffered a prolonged epileptic seizure that lasted more than 40 minutes. After several more seizures and hospitalisations, genetic tests revealed that she suffered from a rare and severe form of gene epilepsy - Dravet syndrome, also called Severe Myoclonic Epilepsy of Infancy (SMEI). Although the disease is genetic, she did not inherit it from either parent; it was just a "gene fault" early in pregnancy. Dravet syndrome is also associated with many other associated diagnoses, such as delayed psychomotor development, hypotonia, attention deficit disorder, unsteady walking, etc. Although Elen looks like a healthy four-year-old girl, she has many limitations in her life. For instance, she has to follow a strict and regular regime, be under constant supervision, stay with the children in the playground, not have too much fun, and not go outside in summer when it is hot outside. All this can lead to a seizure with unconsciousness, which can further delay her development.
Unfortunately, despite all precautions and four different anti-epileptic drugs, Elen has a more significant seizure every week. She can also have seizures during sleep, so we are happy to use NightWatch now.
All these conditions affect our whole family, who must adapt their lives to Elen's needs. Elen cannot attend kindergarten because she tires easily and often sleeps during the day. Despite all the complications, Elen is a very smart and bright four-year-old girl who energises the whole family with her tremendous strength. As her parents, we are happy she has shown us a new path.
Today in my focus: Kerstin, a mom who, out of concern and her professional expertise, is looking for solutions, networking and progress. As a mother of four children (patchwork) and professionally active as Senior Marketing & PR Manager at SHD System-Haus-Dresden GmbH, she is committed to ensuring that the knowledge of epilepsy clinics and competence centers is better networked.
The question that drives her is: Why doesn’t a doctor have better treatment options? “Patient records at the doctor are often in paper form. There is an urgent need for digital data exchange between the competence centers. Data analysis provides information, for example, for the development of early warning systems. Selection options, for example for drug therapies, would enable doctors to provide targeted and significantly better treatment.”
With the company SHD, she produced the film “Epilepsy – better care through digital data analysis and networking of special centers” in the summer of 2023 as part of the 120th-anniversary celebration of the VDK (Association of Hospital Directors), in which, among other things, she highlighted the commitment of the Team of Prof. Dr Angela Kaindl, director of the children’s clinic/neuropediatrics department at the Charité University Hospital, will present research, therapy, prevention and support for epilepsy and report on the SUDEP prevention program at the Charité. An emotional focus of the film is the experience and commitment of Dr Iris Killinger, co-founder of the Oskar Killinger Foundation from Hamburg. The tragic SUDEP death of her 14-year-old son Oskar justifies the strong commitment and the very visible campaign for the foundation’s goal: stopSUDEP!
Here is the link to the video: https://www.youtube.com/watch?v=Oi5Lp17MJKQ
Starting next year, Kerstin will engage as a stopSUDEP ambassador, and she is planning campaigns on the topics of stopFREIFALL and stopNOTFALL to contribute her experience and knowledge to the further development of education and prevention in the field of epilepsy.
Kerstin and her family’s lives have also changed entirely since the diagnosis of epilepsy. You try to integrate the illness into your life and make life as “normal” as possible. When the son is 11 years old and is trying out the new route to school, he suddenly stops as if out of nowhere and only comes to again after a period of absence, and this several times in a row. “And then he just walked across the street,” says Kerstin. “That shocked me the most, but I didn’t understand what was going on at the time.”
“At first I didn’t know, is this puberty, is this normal? The doctors were also at a loss. After half a year of continuous and fruitless visits to the doctor without a clear diagnosis, we got a bed in the Kleinwachau Epilepsy Center, and the diagnosis was made there: epilepsy.
At the Kleinwachau Epilepsy Center, the family found an excellent specialist in Nils Holert, a specialist in child and adolescent medicine, specializing in neuropediatrics, head of child and adolescent epileptology in Kleinwachau, whom they, and especially their son, trust 100% and who has been good to them ever since accompanied. Despite seizure-suppressing medication (ASM), seizures occur every day in the form of absence seizures. He is, therefore, refractory to treatment, which annoys the son and worries the parents (editor’s note: seizures can continue to occur in around 30% of those affected by epilepsy despite ASM). In addition to absence seizures, two severe tonic-clonic seizures (formerly: grand mal) also occurred in 2022, which led to changes in medication (permanently three medications at the same time), and these have an impact on the son and the mother’s concern.
Hospital stay at Christmas time with guardian angel gnome
The son is a good and very committed student who was a school and class representative and is now concentrating on his school leaving certificate. For him, life is “almost” normal, with good days and bad days. “Living with the constant risk of a seizure is not easy, especially for adolescents and young adults: no driving license, limited career choices, limited water sports and being able to live a self-determined life in your own home, to name just a few examples.” Some jobs are not allowed for those affected by epilepsy, such as a pilot. You may only think about the fact that you want to become one when you find out that you will never be allowed to become one.
Sports activities are often only recommended to a very limited extent for those affected by epilepsy, which means major restrictions for those affected themselves. “Skiing – downhill skiing – is generally not recommended. However, we found a ski area where there are mostly gondolas and drag lifts – in Austria – here we spent a few days safely partly with a ski instructor, to the delight of the whole family.”
Skiing in Saalbach-Hinterglemm
“As there was seen a lot of seizures at night in the long-term EEG and do to the unpredictability of those seizures at night, the wearable NightWatch is now being used to detect seizures and so that everyone can sleep better again. After long and exhausting correspondence with the health insurance company and the medical service, this is now my big deal joy that NightWatch was approved for at least a 3-month trial,” says Kerstin. „A big thank you to the lady at the health care insurance company who listened to me and understood my worries“.
The reason for the initially restrictive attitude of the health insurance company: double care. At the beginning of the illness, the family had been approved for a motion sensor, but it did not work satisfactorily. “It takes too much effort to get good, effective care. A child or young adult doesn’t wear that for fun,” Kerstin told the health insurance company. Only after several interventions – from the doctor, from the family and also from us as manufacturer – did anything happen, but that was almost six months after the application was submitted. “It all takes far too long – people have needs at the moment when doctors and patients/relatives are talking to each other – and what do you do in the meantime? This is about a deadly risk – it’s really about my son’s life!”
Yes, it seems that it will still take a lot of effort before there is a security of supply with, for example, aids for people with epilepsy who have seizures despite medication. With this in mind, together with those committed to the field of epilepsy, we will continue to get on your nerves with good intentions – so that something changes.
We wish everyone a peaceful and blessed Christmas and a happy new year.
Yours sincerely, Lilli Langen from Team NightWatch