Johannes, 32 years

Living with my congenital hydrocephalus means overcoming boundaries every day—my own, social, and national. This photo was taken in Tallinn, Estonia, and proves to me that despite, and precisely because of, HC, it is still possible to push the boundaries of what is possible. I hope that this campaign will encourage others who are affected and their loved ones to believe in themselves. If I can do it, so can others.

Tarik, 29 years

Despite the fact that I have had my HC and shunt since birth, I take control of my life. My family knows about my condition, and my friends and coworkers are 100% understanding of my “blackouts.” This has never prevented me from living my life.

Bettina, 50 years

For me, it was chance that showed me what my life would look like in the future. And now I can say that I have become stronger, enjoy my life more, and see some things very differently.

Jenny, 28 years

Hydrocephalus—the invisible disability. I'm participating to raise awareness about this condition! I've had hydrocephalus since I was three weeks old and have already undergone many operations. Even though it's hard sometimes, staying strong is the most important thing!

Sara, 33 years

HC is a tough battle, and my old self no longer exists, even if somewhere there is still a glimmer of hope that it was all just a dream. HC has been part of my life for almost 10 years. I make the best of it, sometimes with humor, sometimes with a pen in my hand, sometimes just like that. HC has not only given me an outlet for my mind, but also one for my soul: art. You can find my feelings at @pinkis.art. We are not alone.

Markus, 25 years

Through handball and my partnership with Miethke, I learned about hydrocephalus and would like to help raise awareness.

Janette, 39 years

Hello, I'm Janette, and hydrocephalus isn't stopping me... As you can see in the photo... As a former premature baby, I've remained pretty much unscathed and only had two and a half thoracic vertebrae replaced with titanium at the age of 11 because the vertebrae were inflamed at the time. I was living happily when, in February, I was diagnosed with a brain tumor and underwent surgery. The fourth ventricle of my brain was no longer functioning and I developed hydrocephalus... Then I had a shunt fitted... Now I'm walking again and setting myself goals.

Andreas, 51 years

Through my daily work, I feel connected to you all every single day... Each and every one of you gives everyone else, whether affected or supportive, the strength not to give up, to keep going and to be passionate about the issue! Thank you!

Gordon, 76 years

Elisabeth, 65 years

Dear affected persons, hydrocephalus is a highly complex condition. You only realise how complex it is once the shunt has been implanted and you still feel unwell. I myself was fortunate because I am being treated at the Charité hospital in Berlin. It is important not to give up.

Axel, 43 years

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 years

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 years

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 years

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 years

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 years

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 years

Even a few weeks after my last surgery, I didn't let it spoil my Christmas spirit...

Erika, 67 years

Yvonne, 44 years

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 years

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 years

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 years

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 years

"Believe in yourself, stay strong and never give up!" (⁠◠⁠‿⁠◕⁠)

Kevin, 35 years

Continue to follow your path and don't let anyone stop you. It has now taken me 5 years and 5 operations....

Jasmin, 30 years

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 years

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 years

Nina, 32 years

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 years

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 years

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 years

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 years

Since the shunt operation, life has made sense again and I can be involved in life again

Anna-Katharina, 30 years

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 years

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 years

When you are torn from your previous life with one blow, you start to see things with different eyes.

Elena, 20 years

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 years

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 years

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 years

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 years

I wouldn't have needed a hydrocephalus, but now I have it and I live with it.

Juliane, 24 years

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 years

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 years

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 years

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 years

I love traveling around the world

Carina, 32 years

No matter what, Hugo belongs to me, sometimes more, sometimes less. I don't let him dictate my life.

Aileen, 25 years

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 years

Chantal, 23 years

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 years

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 years

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 years

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 years

My hydrocephalus is my biggest challenge at the moment. But you can always grow from challenges!

Ole, 17 years

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 years

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.