The water drinker´s story

By Marc, Nephrogenic diabetes insipidus, Germany, February 19, 2021

Marc - The water drinker's story

Marc drank at least 10 times more water than the recommended daily intake of two liters a day for most people: “While others enjoy their cup of tea, Marc preferred a whole bowl of it. The man from Germany has a rare condition since birth. It’s a rare disease — statistically only 360 people in Germany might have been diagnosed with it. The condition is an inability of the sufferer’s body to retain fluid

Unquenchable thirst

This can lead to severe dehydration and high fever after few hours, as if a usual would not drink water in days. So, the access to water must always be given to quench their nearly unquenchable thirst. To keep their body hydrated, people with ndi drink massive amounts of water and are mostly thirsty. For children the overheating body and the massive outtake of urine can lead to rather logistic problems. Besides that, acknowledgment in educational systems, at doctors and families do not make it easier. For example eating habits, body height, and mental health might be affected as well, although there are individual characteristics.

Media campaign and ndi network

By comparison and exchange loads of new knowledge could have been collected, but much research must be done. How is life drinking water all the time? That was never written anywhere. While the genetic and physical origin described well, growing up with has no manual. Some cope with this very good, while others suffer from this. “I wanted to counteract misunderstandings a little and took myself as an example in media” Marc says.

Always thirsty

“If you cannot change the condition, you might change the surrounding” he says. Within his awareness-campaign he told the world that this exits and got in touch with others, who are the same and outside his own family. With a dose of humor, willpower and some trying out all this seems for him doable. While media played the drama card a little and the many obstacles in his life Marc himself is all at all fine with it.

Game-changing medication

Since some years, he is on medication. A game changer in his life: Funny as it sounds, diuretics help to retain water in his body. Although this condition is due to a genetic defect not curable, the medication reduces the amount of water intake drastically. The effect is less thirst, which means that he can sleep much longer without using the bathroom and is not as tired as he was before during the day and doing sport is now easier for him.

Nephrogenic diabetes insipidus (diabetes insipidus renalis) 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 statistically only 1 in 250.000 people have this. In familiesthere is mostly more than person found with this condition. Full grown men drink up to 20 liters water a day, women a little fewer. Nephrogenic diabetes insipidus (diabetes insipidus renalis) is the inherited version of diabetes insipidus and often mixed up with diabetes mellitus. A renanimg is proposed, but no good name has been found yet. Any ideas?

Get in touch

the ndi network
www.marc-wuebbenhorst.de
#stayhydrated

_

Story on “body bizarre“

https://www.youtube.com/watch?v=ap3A2G1GZI4

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

Austin Crawford Fights Multiple System Atrophy | MSA Austin Crawford Fights Multiple System Atrophy | MSA

Fighting MSA: Austin Crawford's Story

Austin, Multiple system atrophy, United States, October 4, 2021

Hi my name is Austin Crawford. I was born in Watseka, Illinois. Raised in a rural area I started riding dirt bikes at a young age and continued to ride up until the age of 47.  I was a Street Supervis...

Sofia Angiuli Sofia Angiuli

Sia Strong

Stephanie Kale, Leukodystrophy and Epilepsy, United States, September 14, 2021

In 2019 our daughter was diagnosed with epilepsy. We noticed a decline in abilities and trouble with walking so we had further testing done. An MRI and whole exome sequencing revealed a variant in gen...

Infantile Neuroaxonal Dystrophy (INAD) Infantile Neuroaxonal Dystrophy (INAD)

Alice from Brazil is living with Infantile Neuroaxonal Dystrophy (INAD)

Isabela, Infantile neuroaxonal dystrophy, Brazil, August 23, 2021

My name is Isabela, I am Alice's mother who is 3 years old. We are from Brazil!Alice had her normal development until she was 18 months old. Alice sat alone, crawled and walked with support. After she...

My family My family

Xander's Journey finding a cure

Yohanna, SLC6A1, United States, March 1, 2021

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed he was not getting his milestones, and of course, I was conce...

Mia Mia

Mia

Maja, 1p36 deletion syndrome, Croatia, February 28, 2021

My daughter Mia was born with congenital cytomegalovirus infection and from birt we new she will face a lot of obstacles in her life. We were told she will never walk, talk etc. But she was little war...

SuperBouli SuperBouli

Story of SuperBouli

BOULI, Sandhoff disease, infantile form, Lebanon, February 27, 2021

SuperBouli for rare disease day 2021Read my story or watch the video to know why I am superRarehttps://youtu.be/Rw4hV_sk6VQHello!!! I am Bouli, and this year, on the 28th of February, the rare disease...

Photography credit: Oumayma B. Tanfous Photography credit: Oumayma B. Tanfous

Keep on Smiling

Maria, Beta-thalassemia, United States, February 25, 2021

Keep On Smiling“Keep on smiling” the young doctor said to me at an impressionable age of ten. Those words, at that time, influenced the rest of my life. I was born with a rare disease, Beta Thalassemi...

On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling. On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling.

"Juvenile ALS" occurs in less than 1 out of 1 million people

Bibi, Amyotrophic lateral sclerosis, Austria, February 24, 2021

Hi, I’m Bibi, 32 years old, from Austria (Europe) and was diagnosed with ALS (Amyotrophic Lateral Sclerosis) at the age of 18.My first symptoms started to show in 2005 when I was 16 years old. I notic...

Hagamos visible las enfermedades raras... Hagamos visible las enfermedades raras...

Nahiara... el amor en persona

Claudia, Williams syndrome, Argentina, February 24, 2021

Mi nombre es Claudia, mamá de Nahiara,  ella fue diagnosticada a los 7 meses de edad con Síndrome de Williams, una detección en el cromosoma 7q11.23. Dentro de las características principales de éste ...

Palden and Mom Palden and Mom

The Glimpse into Palden's Journey as the First SMA Patient of Bhutan

Ugyen, Spinal muscular atrophy with respiratory distress type 2, Bhutan, February 22, 2021

Palden is a 12 year old girl from Bhutan. She was diagnosed with Spinal Muscular Atrophy (SMA), Type II, at the age of 9 months, as the first case and one of the only two diagnosed in the country. SMA...

Laurenne in Wellington Laurenne in Wellington

You have what now?!

Laurenne, Panhypopituitarism, Hypogonadotropic hypogonadism, New Zealand, February 10, 2021

Hello to everyone reading this, my name is Laurenne, and I was born with congenital Panhypopituitarism (CPHP), and Hypogonadotropic hypogonadism (HH)It briefly means that all the hormones that a funct...

Yasmin ElSamra & mama hanaa elsadat Yasmin ElSamra & mama hanaa elsadat

Yasmin ElSamra left a legacy

Yasmin ElSamra, Epidermolysis bullosa dystrophica, Egypt, February 6, 2021

Epidermolysis  Bullosa (EB) is a genetic condition that causes the skin to be fragile, blistering easily. Blisters and skin erosions form in response to minor injuries or frictions. Mutations in the C...

X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.