Marc Wübbenhorst - ndi/DIR, work and goal

"Keep the glass half full,
not half empty. It is all a point of view."

Foto: Peter Wehowsky


"Hey, i am Marc from Germany. I was called ´The thirstiest man of Germany´ by the media. This is because i need to drink a lot of water, it really has been 20 litres a day! My goal is to inform about nephrogenic diabetes insipidus. I mainly work in city development, in education and teaching languages. I would love to share my experience with you. It´s important to support others. I share that title."

#stayhydrated

"It is about making the best of it. Acceptance, empowerment, humour, changing the circumstances. There is always a good solution, an oasis or well. All make a journey and have a package to carry. I would love to hear story and get connected."

Marc Wübbenhorst from the German city of Bielefeld drank at least 10 times more water than the recommended daily intake of two litres a day for most people - due to his unique condition ndi.


Marc Wübbenhorst
 
 
 
I want to learn about Nephrogenic DI
I have generel questions
I have the same as you have
I wanna talk business
Other / different
 
 

2021:  february 28th -
Rare disease 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.

Marc Wübbenhorst

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.

#stayhydrated

Klick there ->
for Marc´s video-answers to 25.000 comments questions on that tlc-video
on his youtube channel

Klick on the logo for Marc´s "the water drinker´s story"

Rare condition
The 39-year-old German has nephrogenic diabetes insipidus renalis. It’s a rare disease, only one person in 250.000 has this. It is inherited, so he has it from birth. Some years ago, Marc told the world that this exists. 300 Milionen people might have seen this, and others with the same condition where invited to tell there stories as well.

The condition – which, despite its name, is unrelated to diabetes – is an inability of the sufferer’s body to retain fluids. Unquenchable thirst and sleepless nights are symptoms. 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!"


"I drank 20 litres a day, that is 5 gallons. Not by force, but driven by unquenchable thirst due to my condition. I was that thirsty. But honestly, i do love all kind of drinks. Water is the best. Fresh water should be accesable for everyone on the planet."

Medical background

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.

"To tell my story meant to support others as well. People with rare diseases should find thereselfs in a strong community."

Since 2017 Marc has been running an outraging media campaign to spread the word of nephrogenic diabetes insipidus . His goals: awareness, support, counseling, research, connecting people, drinking water.

"It´s about the kids, who grow up now and those, who are in need or fear 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."


#medschoolsocool  Listen here ->
to Diabetes insipidus song, a good rap explanation with a description of this condition, warmly recomended and found on youtube

Work and interest

+ education / special needs education
+ rural and urban development

+ regional history, oral history

+ guided city tours

+ history of urban planning

+ linguistics / (minority) languages

+ cultural education

+ public relations and journalism

+  special needs and inclusion

+ school development

+ architecture and urban planning

+ city development

+ languages and linguistics

+ media and filmproduction
+ writing and books

+ public relations

+ church service

+ horses and horseback riding
+ Netherlands, Frisia, Eastfriesia

... and intersecting issues

+ "Ortsheimatpfleger" of Sennestadt

+ Chairman to HBR.G

Please no Sexism, Ageism, Racism.