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26 & 27
March 2019

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Birmingham

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How a tuberous sclerosis diagnosis changed this family's life

Restaurant Tech Live blog post 1

Jeannette Bobos is a power woman! She is 40 years old, married and mother of three children. Her eldest son, Felix, is 16 years old and suffers since birth from the rare and incurable disease of tuberous.

We visited Jeannette and talked to her about the pitfalls of everyday life, the joys of her family and the use of the new, intelligent TEXIBLE Wisbi® bed insert.

Tuberous sclerosis is a rare disease and therefore some of our readers are wondering what exactly it is?

Jeannette: Tuberous sclerosis is a genetic mutation. This means that it can lead totumour formation in the organs. Most of them are benign, but of course they aredisturbing. Felix, for example, has many tumours in his head, but also in his heart, kidneys, and also superficially on his face and eyes. Once a year Felix is checked under general anaesthesia if further tumours have formed. In each case only the symptoms can be treated, but not the disease itself.

When did you find Felix affected by this condition?

Jeannette: Already in the first week of life Felix had epileptic seizures. However, we did not know what the cause for this was. Only after 3 ½ months without certainty, could a new paediatrician made the diagnosis.

How did this diagnosis change your life?

Jeannette: Completely! The whole family's life is all about Felix. If you want or not. Buying a couch, planning your own time, looking for a job, everything is linked to the needs of Felix.

How does your daily routine look like?

Jeannette laughs: It starts with getting up tired. We always have too little sleep! Then go to Felix first, change clothes and have breakfast. He needs in all activities a 1:1 care either from my husband or me. The other one looks after the other two children and pets. Afterwards we bring Felix to the supervised workshop where we pick him up in the afternoon. The time afterwards, he spends most of his time in his room cuddling together with us. Then we have dinner, a little bit of cuddling again and then we all go to bed.

Do you get support in your everyday life with Felix?

Jeannette: Since he was one year old Felix is in a supervised workshop group in Götzis. During the week he spends his day time there. For us as a family this is a huge relief. We would also like to have a care at night, so we can also have a sleep without interruptions, but this is unfortunately currently not financeable and we do not have enough space for a carer.

Incontinence is always a big issue with illnesses, what are your hurdles?

Jeannette: Felix drinks a lot of water every day and needs an average of 8-10 diapers per day. We change the diapers at least twice a night. If we are too late then Felix is completely wet and that means that we not only have to change his underwear but all the clothes and the complete bedding. That means waking up Felix, putting him new clothes on, as well exchange the whole bed textiles and put new ones on. Then wash the clothes immediately. The same procedure every night 2 - 3 times. The washing machine and the dryer run day and night and without constant checks of the diapers it does not work.

Since one year you are using TEXIBLE Wisbi® - the bedding textile which detects liquid – how is it going with this product?

Jeannette: It is a huge relief! I would not have thought that at the beginning. Of course, Felix wakes up the same number of times during the night - but with the immediate alarm, I just have to put on a fresh pair of pyjama trousers and put on a new bed insert. This doesn’t take long and Felix - Jeannette laughs and added: and us as well! – can go to sleep immediately again. Also the tons of laundry at night are gone.

What are your wishes from the society and the care environment?

Jeannette: That such supportive products as TEXIBLE Wisbi, but also good diapers, medicines and other aids are taken over by the health insurance. For us as a family it is all extremely expensive!

We would like to thank Jeannette for her honest interview about her everyday life with Felix. We are pleased that we were able to get to know this positive and happy woman and are happy that we can support her in their everyday life with our product!

Find TEXIBLE at stand 9092 at Naidex.

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