• M.blue Shunt
  • HCandME App - hydrocephalus diary
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  • Articles
  • Shunt infection: How it develops and how it can be prevented
    • Shunt therapy is the most common treatment for hydrocephalus, but carries the risk of serious complications such as shunt infections. Find out more about symptoms, causes, treatment options and preventive approaches such as antibiotic-impregnated catheters.
  • LP shunt vs. VP shunt
    • The choice between LP and VP shunt is essential for the successful treatment of hydrocephalus. This article provides a detailed comparison, looking at the indications, benefits and potential risks of both types of implantation - informed insights for better treatment decisions.
  • The Innovative Leap to Telemetric Pressure Sensors
    • Telemetric pressure sensors are setting new standards in the hydrocephalus shunt therapy. The article analyzes the technical limitations of conventional ICP sensors and presents trend-setting innovations in the field of measurement with telemetric pressure sensors - for more precise and efficient treatments.
  • The measurement of intracranial pressure (ICP)
    • The measurement and interpretation of intracranial pressure (ICP) is a very helpful aid in the diagnosis and treatment of many brain diseases. The article explains the technical requirements for ICP measurements, the interpretation of ICP values in intracranial pressure measurements and their significance for effective treatment planning.
  • Over- and underdrainage - the most common “side effects” of shunt systems
    • Shunt systems in hydrocephalus therapy have a long history, but over- and underdrainage are still common complications with their potential consequences, such as slit ventricle syndrome. The article looks at the causes, consequences and therapeutic approaches of both problems and discusses whether gravitational technology offers a possible remedy.
  • Foundations of fluid mechanics, or of beakers, bottles and people
    • The article introduces fluid mechanics and explains how the cerebrospinal fluid works in the human brain. It explains the hydrodynamics in the shunt system and shows why the circulation and pressure of the cerebrospinal fluid are important factors for optimizing shunt therapies.

#MyHCandME

Tell your story

and give hydrocephalus
a face.

Join now

#MyHCandME

Tell your story

and give hydrocephalus
a face.

Join now

#MyHCandME

Tell your story

and give hydrocephalus
a face.

Join now

#MyHCandME

Tell your story

and give hydrocephalus
a face.

Join now
#MyHCandMe
STORIES

#MyHCandME

YOUR HYDROCEPHALUS, AS INDIVIDUAL AS YOU ARE

Your hydrocephalus is as unique as you are. With this campaign we want to give hydrocephalus a face, or better: several faces. Because hydrocephalus and with it the lives of people affected are as different and individual as they are. And every story is worth being told and heard.

With our photo generator, you can participate in the campaign in three simple steps: Upload your image, personalize it with a statement, download the finished image and share it with your friends, family and community.

Let's raise awareness about hydrocephalus together.

HOW TO CREATE YOUR OWN campaign photo

Step #1

Show us who you are!

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  • Upload a photo of yourself that fits to your story.
  • YYou can customize the image section in the tool.

 

Step #2

Choose your personal statement.

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  • Choose the statement that's right for you. It will appear on your #MyHCandME photo.

  • If you like, you can add a short message, which will appear together with your photo in the gallery.

     

Stept #3

Share your photo.

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  • After your approval, we will publish your campaign photo in our gallery.
  • You will receive your personal photo by mail, so you can share it on your social channels.

 

Photo generator

Upload a photo of yourself that fits your story. You can customize the image section in the tool.

Max. File size: 7 MB Supported file formats: .bmp, .gif, .jpg, .png Note: If you are under 16 years of age, your participation is unfortunately not possible.
The photo must not violate existing legal regulations or morality. In such cases we reserve the right not to publish the photo. If you have any questions, feel free to contact us.
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After you upload your information and confirm your email, we will manually check your photo. Please be patient. After the check, your photo will appear in the community gallery with your personal message. In the confirmation email you will find the link to download your photo. Share your #MyHCandME photo on your social media channels, comment and react to other participants' posts and create more awareness for hydrocephalus.

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STORIES

What does your life with hydrocephalus look like? Here, our participants tell their very personal story with their hydrocephalus, their moments of courage and difficult phases. Honestly and freely.

Diagnosis Hydrocephalus – and now?!

A hydrocephalus diagnosis also comes with many questions and uncertainties. In this short explanatory film, we give an overview of symptoms, therapy and life with a shunt.

My life with Hydrocephalus

Let´s Raise Awareness for Hydrocephalus - #ElevateYourVoice

[Translate to English:]

Claudia

"There was a lot fear and uncertainty - but I took Ole as a role model," Claudia, the mother of our campaign participant Ole, tells us about her life as the parent of a child with hydrocephalus. Especially the first time after the diagnosis was hard, she says.

[Translate to English:]

An update from Julia: Listen to your body!

We got to know Julia in 2018. She has an acquired Hydrocephalus. She was diagnosed when she was 14 years old. We've stayed in touch over the years and today she would like to give you a little update.

[Translate to English:]

Mary

Mary talks about her childhood with hydrocephalus, her friendships with other patients and which kind of support she needs and prefers, when she is feeling unwell.

[Translate to English:]

Ivo

Ivo talks about his childhood with Spina Bifida and Hydrocephalus as well as his road to competitive sports. He makes clear: Barriers for people with disabilities are created by society and that is something we all have to change!

[Translate to English:]

Rahel

Rahel´s Hydrocephalus has been with her her entire life. She has learned to live with it and yet it continues to be her biggest challenge. She says: It is time to give the people who are affected a voice!

[Translate to English:]

Ole

Ole does not let his hydrocephalus stop him. Ridding rollercoasters, going to parties, traveling and music – he wants to live his life the way he wants to!

 

 

 

 

Axel, 43 "My hydrocephalus has made me stronger."
"I was diagnosed at the age of 37 and the first two years were characterized by difficulties in handling and living with the implant. Today I have to say I'm doing great. I have found a good way of dealing with the remaining limitations. My credo: giving up is not an option and deal with it openly."
Laura, 27 "My hydrocephalus showed me what matters most."
"Living with hydrocephalus has shaped my life and defined my mission in MedTech: to always put patients at the heart of everything we do."
Angelika, 49 "My hydrocephalus does not stop me."
"Suddenly diagnosed with hydrocephalus at the age of 13.... First shunt operation... This shunt lasted 35 years. Until then I led a completely normal life. I had two children and last year I had a new shunt fitted"
Marina, 31 "My hydrocephalus does not stop me."
"At the time of my diagnosis, I was 15 years old and promised myself that I would live my life exactly as I wanted to. This is still my motto today and I try to make the best of every day with a shunt. I've realized some of my dreams, such as studying and travelling, and I'm looking forward to everything that's yet to come."
Gino-Domenico, 36 "My hydrocephalus is a part of me."
"Initially a curse and a blessing at the same time! I don't regret my shunt called piihkksi because it makes my life possible. Grateful for every moment."
Mirjam, 25 "My hydrocephalus has made me stronger."
"I was not born with hydrocephalus. I received my VP shunt after several operations on my brain and skull (Arnold Chiari decompression surgery). There are so many paths that lead to hydrocephalus, it doesn't have to be scary. With the shunt, I received optimal care and my hair is growing back. ???"
Enrico, 42 "My hydrocephalus is a part of me."
"Auch wenige Wochen nach der letzten OP ließ ich mit dir Weihnachtsstimmung nicht verderben..."
Erika, 67 "My hydrocephalus is a part of me."
Yvonne, 44 "My hydrocephalus creates connections."
"After more than 20 years with the wrong valve, I got the first Miethke in 2016 and thus my life back; THANK YOU Christoph Miethke Team, but the best valves don't help without good neurosurgeons, I still lack them, that brought me resources, and the bike (my dream) is in the corner, but I'm fighting..."
Ulrike, 54 "My hydrocephalus is a part of me."
"Never give up, push the boundaries and keep going, keep going. Recognize what and who is good for you, the rest is not important and doesn't deserve any effort. I don't always want to be reduced to my deficits, if possible I just want to be allowed to be like everyone else."
Marko, 53 "My hydrocephalus does not stop me."
"I was very lucky from day one. Great parents, great doctors and that was in 1969/70. Today, thanks to C. Miethke, everything is so much better and easier for those affected. I've never missed anything and I'm a happy husband today. It didn't take courage. Only the right environment. Thank you to Potsdam :-)"
Mona, 43 "My hydrocephalus is a part of me."
"I just want to be accepted.... and NOT be ashamed of the fact that I have to live with hydrocephalus! This constant pressure to function "normally" is very difficult for me.... also because I have always had to put up with comparisons with my younger siblings, both of whom do NOT have HC."
Sarah, 35 "My hydrocephalus does not stop me."
""Believe in yourself, stay strong and never give up!" (⁠◠⁠‿⁠◕⁠)"
Kevin, 35 "My hydrocephalus does not stop me."
"Continue to follow your path and don't let anyone stop you. It has now taken me 5 years and 5 operations...."
Jasmin, 30 "My hydrocephalus showed me what matters most."
"I am Jay, 30 years old & suffer from the disease iiH. I've been fitted with the Mblue + for a month now & the Mscio will be joining me soon. The road is hard & bumpy, but with the love of my life, Laura, I can manage any difficult path. You can fall down, but giving up is never an option! Much strength to all fellow fighters"
Christin, 39 "My hydrocephalus showed me what matters most."
"My hydrocephalus was unrecognized for 18 years! When the disease became life-threatening and the pain unbearable, the cause was finally found, until then my life had been one big battle! I still struggle every day with the consequences of the late diagnosis, especially with often severe headaches and low resilience!"
Katrin, 49 "My hydrocephalus has made me stronger."
Nina, 32 "My hydrocephalus does not stop me."
"From one day to the next I was a care patient, I fell all the time, could hardly walk and certainly couldn't walk up any stairs, the diagnosis of hydrocephalus turned my life upside down from 0 to 100."
Philippa, 37 "My hydrocephalus does not stop me."
"I was diagnosed with Hydrocephalus as a young baby after being born with a very rare condition. It has made me a very positive, determined person because I know how short life can be - I'm currently learning to fly (with the Miethke shunt in my skull) and I love it! The message on the aeroplane reads "Still Running"."
Hans Ulrich, 63 "My hydrocephalus is a part of me."
"Cycling is my great passion!!! With hydrocephalus every day is different, one day I'm in a good mood the next day I'm not fit to cycle! I have to listen to my body more! ""Ability to perform???""
Michelle, 24 "My hydrocephalus is a part of me."
"You should always listen to what your body is telling you is wrong. Even if you are young, you can get a chronic illness - it can affect anyone. But you are not alone."
Daniela, 47 "My hydrocephalus showed me what matters most."
"Since the shunt operation, life has made sense again and I can be involved in life again"
Anna-Katharina, 30 "My hydrocephalus does not stop me."
"Hello, I have a very long story, so in general I can only advise everyone to keep going. There are situations where everything is exhausted and yet you keep going. I suffer from pseudotumor cerebri and have already had many shunt operations. We are strong! You are great the way you are!"
Ine, 42 "My hydrocephalus has made me stronger."
"The main difference when i got my first shunt in my head is that I could re-open my eyes, it felt that my brain slowly started working a bit more and the hope that I had hidden came back on the surface. Every time things go wrong you come back stronger and you just have to keep on fighting... believe and hope..."
Catharina, 35 "My hydrocephalus showed me what matters most."
"When you are torn from your previous life with one blow, you start to see things with different eyes."
Elena, 20 "My hydrocephalus showed me what matters most."
"When I was diagnosed with hydrocephalus at the age of five, I already had the head circumference of an adult. I am very grateful that the two subsequent operations went so smoothly and that I can now live without restrictions. The only thing I can't do is borrow helmets or caps from friends ;)"
Kristina, 22 "My hydrocephalus showed me what matters most."
"Hydrocephalus is an invisible, complex and challenging disease. I have mine due to a brain tumor. Since the implantation, I understand my body more, pay attention to the signs and want to advocate more for visibility of the disease! Instagram @kriitna"
Mona, 20 "My hydrocephalus is a part of me."
"I can't do anything about the hydrocephalus. The only way is to accept it and live with it. But I was able to achieve so much even with hydrocephalus. Sometimes it goes downhill, and then I have to get new energy to get back up again."
Christina, 34 "My hydrocephalus showed me what matters most."
"Living with hydrocephalus is possible even if it causes some problems. It is important to always have goals that you are working towards."
Fabiano, 25 "My hydrocephalus is a part of me."
"I wouldn't have needed a hydrocephalus, but now I have it and I live with it."
Juliane, 24 "My hydrocephalus is a part of me."
"Like my spina bifida, my hydrocephalus has been part of my life since birth. The hydrocephalus hardly limits me at all. Only the wheelchair is an obstacle in many areas of my life. Nevertheless, I was able to graduate from school and complete an apprenticeship. Now I hope that I can find a job."
Julia, 23 "My hydrocephalus is a part of me."
"For the longest time in my life, hydrocephalus was NOT a part of me. After the diagnosis in 2012, I had to come to terms with it. 20 operations later, I still find it difficult to accept hydrocephalus on some days. But thanks to the many great people who support me, I am never alone."
Celina, 25 "My hydrocephalus does not stop me."
"I am proud of my body. It has come through a lot. My scars only show that I can live a healthy and grateful life."
Maria, 33 "My hydrocephalus does not stop me."
"My hydrocephalus has taught me to keep fighting, to be strong and not to allow myself to be restricted. There is something positive in every situation. It just sometimes takes time to recognize this. I don't let hydrocephalus rule my life. I just need to take a little more care of myself."
Friederike, 32 "My hydrocephalus has made me stronger."
"I love traveling around the world"
Carina, 32 "My hydrocephalus has made me stronger."
"No matter what, Hugo belongs to me, sometimes more, sometimes less. I don't let him dictate my life."
Aileen, 25 "My hydrocephalus showed me what matters most."
"Even with hydrocephalus, you can live a normal, fulfilling & happy life, even if minimal, individual adjustments are necessary. I have great people around me who make me forget my condition, but not forget how disruptive it can sometimes be. That is very important."
Susanne, 47 "My hydrocephalus showed me what matters most."
Chantal, 23 "My hydrocephalus showed me what matters most."
"Suddenly torn from life at the age of 17 with a diagnosis of hydrocephalus, many ups and downs but never gave up. I feel good and appreciate life more than before ?"
Luca, 18 "My hydrocephalus is a part of me."
"Having hydrocephalus doesn't automatically make you different. I only found out that I had hydrocephalus when I was 12. Since then, I've tried to deal with it (even if I still find it difficult now). Over time, however, I've learned that you're still just like everyone else."
Siti, 48 "My hydrocephalus is a part of me."
"I was told that I would remain weak and would not get far with school. The good Lord protected and supported me. I love my freedom and independence."
Ivo, 40 "My hydrocephalus does not stop me."
"I have spina bifida and hydrocephalus from birth. I was taught as a child: no ball sports, no swings, no merry-go-rounds. And then at some point when I got older, I found out that I can do a lot more with hydrocephalus than I thought. I was a professional hand cyclist for 24 years and still do a lot of sport in the gym, go to physiotherapy and have been arm wrestling for three years."
Rahel, 27 "My hydrocephalus is a part of me."
"My hydrocephalus is my biggest challenge at the moment. But you can always grow from challenges!"
Ole, 17 "My hydrocephalus showed me what matters most."
"I had my shunt when I was three months old. I'm here to encourage other people and to show other people: I am here and I will continue to be here and fight to live my life the way I want to live it."
Mary, 22 "My hydrocephalus has made me stronger."
"I would say that this disease, hydrocephalus, is simply not publicized enough because you don't see it straight away. It simply always has a negative connotation when you hear that you have a disease. But I think it depends on how you deal with the disease."

 

#MyHCandME

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This might also interest you

Symptoms

The symptoms for hydrocephalus can vary depending on various factors: for example, age or type of hydrocephalus.

[Translate to English:]

Patients share their story

Hydrocephalus has many faces - Patients talk about their very individual requirements for their life with hydrocephalus.

[Translate to English:]

#MyHCandMe

Patientin und Ingenieure sind gemeinsam abgebildet

OUR PARTNERSHIP
WITH B. BRAUN

B. Braun and MIETHKE - Together for a better life with hydrocephalus

We have a long and intensive partnership with B. Braun in the field of neurosurgery. We are driven by a common vision: to improve the lives of hydrocephalus patients around the world with innovative solutions.

Our partnership is an exciting combination of B. Braun's nearly 180 years of expertise as one of the world's leading medical device and pharmaceutical companies and our agility as an innovative company and technology leader in gravitation-based shunt technology. 

 

Our strong partner in neurosurgery:

www.bbraun.com