01 - nephrogenic diabetes insipidus
The thirtiest man: See here the medical backround and learn more about diabetes insipidus renalis / nephrogenic diabetes insipidus through Marc´s own story. Get connected with the man, who drinks twenty liters of water a day!
Since his medical condition changed, he wants to use this extra power to the ndi-family. Help him him to realise the first steps. Leave a tip for a meet up of the most thirtiest on the planet!
01-step one: "Water drinkers congress" Europe
we want to organize a congress and meet-up for this unheard condition. the date is not fixed yet, but we are loking forward tomake this possible in 2020. Support for travelling cost, speakers, accomodation, childcare, invitations, translation, documentation and public relations are besides large amounts of funny drinks necessary. the aim is to connect the families in real life, exchange knowledge and devolepment new programmes ,finding out the unsaid needs, sorrows and expectations.
02- step two "fund for child support"
... supporting boys and girls and their families having a good future by increasing the awareness of nephrogenic diabetes. we believe, that connecting is the right step.
03- step three - "Research centre"
Fund for research on historical, medical, educational issues, documentary and campaign evaluation, genetics
Background: Rare water drinkers
nephrogenic diabetes is a condition where patients have to drink massive amounts of water. The inherited ndi is so rare, that only one in 250 0000 are effected - but in families, you find usually more than one member drinking more than 20 litres of water.
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 36-year-old German has suffered from diabetes insipidus reanlis since birth. It’s a rare disease – only few people in Germany have been diagnosed with it. 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. After finding medcine, Marcs condition changed. "it is trought the worldwide connection" he says "people with rare conditions must connect"
Nephrogenic diabetes insipidus (also known as renal diabetes insipidus) is a 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.
Since 2017 Marc has been running an outraging worldwide campaign. His goals :
- awareness for nephrogenic diabetes
- connecting people
- supporting, counseling, research
- support families in existentiell needs
Marc´s Website - feel free to connect