Marc Wübbenhorst in 2021 / Foto: Peter Wehowsky
Since 2017 Marc has been running an outraging worldwide campaign. His goals:
- awareness for nephrogenic diabetes
- connecting people
- supporting, counseling, research
2021: february 28th - Rare diesease day!
2020? Stay home!
Strange it all is. But please: stay healthy. Its a good time to read books. Keep distance.
End of 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.
FAQ and correction
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 (city development projects, cultural education, public relation, journalism, citymanagement) and a a freelance language trainer.
At a school for children with speacial needs i used to work as a freelance pedagogue.
Since more than a decade, i work mainly for alberts.architekten (social tailured architecture).
I don't use the bathroom 50 times a day, it's more like 15 times.
With medicatiaon of ndi, the amount of water I need reduced massivly, maybe it´s 7 litres with the use of hct.
birthdate: 4th of December 1981. I am 39 years old, till end of 2021.
Kidney transplant, esoteric stuff, kangan water or outrages chats about my private life do not solve any problems.
Work and interests
+ 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
+ city development and
+ language courses
+ media and filmproductionp
+ public relations
... an intersecting issues
urbansim, development, ndi, languages, special needs education, history, journalism, training, counseling
authorities and networks
+ "Ortsheimatpfleger" of Sennestadt
+ Chairman to HBR.G
Diabetes insipidus renalis
nephrogenic diabetes insipidus
Marc Wübbenhorst from the Western German city of Bielefeld drank at least 10 times more water than the recommended daily intake of two litres a day for most people.
The 39-year-old German has diabetes insipidus renalis 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!"
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.
"It´s about the kids and those, who are in need or suffer from the darkness. It is for the mums, the sleepless nights and the exhausted. It is for those, who are not recognized. I made this for them. It is about the fever, the nightmerries, the tiredness. It is about hope, love and family."
Please no Sexism, Ageism, Racism or other -ism. I am bored by that.
Use of my intellectual property is no fun.