ask me in: german, platt, friesian, dutch, swedish, spanish, indonesian, french, english
all fotos (c) Leya Parvati, 2018/2019
2019: What is new?
I have been trying out diuretics for a year now - that changed everything, They help to contain water, i need less of it and i also lost weight! Shoot me a message if you want to know about that change.
People with rare conditions should support each other. So feel free to join our facebook groups.
Work: Urban and Rural Development, Education, Special Needs, Water
Make the best of it: With a slightly different view on the things sourrounding him Marc Wübbenorst works at an architect´s office for a decade now. After studiying history and education he used to work at a school for children with disabilities. Beeing involved in school planning and social tailured projects Wübbenhorst now is busy with urban and rural development and educational projects.
+ rural and urban development
+ education / special needs education
+ regional history and guided city tours
+ history of urban planning
+ linguistics / (minority) languages
+ cultural education
+ public relations and journalism
+ children with special needs
+ school development
+ Cultural Education
+ architecture urban planning
+ member of the
social democratic party (SPD)
+ "Ortsheimatpfleger" of Sennestadt
+ Chairman to HBR.G
Since 2017 Marc has been running an outraging worldwide campaign. His goals :
- awareness for nephrogenic diabetes
- connecting people
- supporting, counseling, research
- access to water
Nephrogenic diabetes insipidus (also known as renal diabetes insipidus or diabetes insipidus renalis) is a rare form of diabetes insipidus primarily due to pathology of the kidney. This is in contrast to central/neurogenic diabetes insipidus, which is caused by insufficient levels of antidiuretic hormone (ADH, that is, arginine vasopressin or AVP).
Nephrogenic diabetes insipidus is caused by an improper response of the kidney to ADH, leading to a decrease in the ability of the kidney to concentrate the urine by removing free water. It is said, that statisticly only 1 in 250.000 people have this.
Good to now
In some media i am called "architect". I never called myself as such. I am not an architect. I used to study education and history, some protestant religion in Bielefeld and Groningen. I work at an architect´s office (regional development projects) and freelance city guide and social entrepeneur. I also teach dutch and low german.
- I used to work at a school for children with speacial needs a freelance pedagogue
- Since a decade, i work mainly for alberts.architekten (social tailured architecture) in city development and others.
- I don't use the bathroom 50 times a day, it's more like 15 times.
- I am born 4th of December 1981. I am 37 years old, till end of 2019.
- Kidney tranplant, esoteric stuff or outrages chats about my private life do not solve my problems. I never complained, so do not use the word "suffer" in my case.
- I am frisian with german citizenship.
all fotos (c) Leya Parvati, 2018/2019
Coke, woodruff and gummy bears are my secret obsession.
I love chess, classical music, art, singing, hiking, archery, martial arts, dancing and horse riding. I try to learn how to play the piano.
Interview in MedAmbiente
"Mr. Wübbenhorst, you personally have a very rare illness that puts a strain on you in your everyday life - and you also network with affected people, researchers, the media, etc. in this regard. Does this sharpen your understanding of questions of living together, questions of inclusion?"
"Marc Wübbenhorst: Well, everyone has something and I have just that. All in all, my view of things in general is a bit different. However, I am not the disabled person, who is now also working for inclusion, that's just not enough.
Ignorance is part of the disability. I had hoped to find people who had such a thing, and I wanted to make one or the other easier for those who now have children. I offered my own case as best practice. Of course, the media wanted to bring the drama and play the freak factor, which I think is perfectly fine.
I'm going to put different projects on the subject: a congress, social and psychological research, the issue of water availability. Many comments were very ugly, but that also unmasked. On the other hand, I now know people all over the world. In Germany, we have such a culture of suffering and neediness; in other countries, the focus is more on the question: What can I do to improve the situation? I always say: you can make something out of everything." source: medAmbiente 2019 [german only]
Diabetes insipidus renalis
nephrogenic diabetes insipidus
Marc Wübbenhorst from the Western German city of Bielefeld drinks at least 10 times more water than the recommended daily intake of two litres a day for most people.
The 37-year-old German has suffered from diabetes insipidus since birth. It’s a rare disease – only 60 people in Germany have been diagnosed with it (statisticly 360). The condition – which, despite its name, is unrelated to diabetes – is an inability of the sufferer’s body to retain fluids.
These days, Marc Wübbenhorst says he can live with his condition and manages to cope with it with the help of generous doses of humour. "Make the best of it!"
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