You are not alone
Because here you can meet people who have been living with retinoblastoma for a long time and share their story with you 👊 . We have made videos for you with our encouragers! The topics: first love, children, cancer, family, friends and (life) dreams!!! 🤸
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Weitere InformationenGiving courage - living with RB
"A life with an RB is definitely a life worth living."
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Weitere InformationenGiving courage - living with RB, part II
"There were moments when I was very sad."
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Weitere InformationenGiving courage - living with RB
"I can do more than people give me credit for."
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Weitere InformationenRetinoblastoma Survivors Part IV
"And then I took the eye out and threw it around."
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Weitere InformationenRetinoblastoma Survivors Part V
"I was lucky enough to always have a girlfriend and the first one was actually quite pretty!"
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Weitere InformationenRetinoblastoma Survivors Part VI
"I didn't meet other people with RB until I was 21. That was very emotional."
TOGETHER WE ARE STRONG
OFFERS
Dates
All hands on deck: Our sailing camp for RB Survivors aged 12 and over takes place regularly: without parents, but with the sailing world champions of the German Sailing League – on world champion boats.
Join us and register now.
Our sailing camps for young people on Lake Möhne with Ole and team
Since 2023, we have been taking the KAKS Youth – an offer for young people aged 12 and over – to Lake Möhne and out onto the water!
Without parents – adventure, fun, action and unforgettable moments.
You won’t be sailing with just anyone, but with real sailing world champions from the German Sailing League: Ole and Jocky would like to introduce you to this fascinating sport, share their passion for it with you and show you why team spirit, cohesion and sportsmanship are so important here.
What makes these weekends so special:
- Sailing with the pros: sailing on real professional boats with the world champions.
They learned the basics of sailing, performed exciting maneuvers and felt the power of the wind in their sails. - Adventurous night hike: After an exciting day on the water, they went on an exciting night hike in the evening.
Equipped with flashlights, the young people explored the area around Lake Möhne and experienced nature in a whole new way. - Cozy campfire: What would an adventure be without a cozy campfire?
We spent the evenings around the crackling fire, telling stories, singing songs and enjoying the company.
It was the perfect end to every day. - Cool surprises: Our world champions had a few surprises up their sleeves, which made for bright eyes and lots of fun.
From small competitions to special prizes – there was something for everyone. - Community and friendship: The weekend not only offered sporting challenges, but also the opportunity to forge new friendships and grow together as a team.
The young people supported each other and experienced how important team spirit is.
Dr. Winter HELPS
You young people in particular often have urgent questions 💬 that you don’t want to ask your parents, siblings or friends.
That’s why you can write to us and ask questions 👨🏼💻📬.
Anonymous.
The experts at Dr. Winter will consult with you 🧠💡and answer exactly these questions.
They will be treated confidentially and discussed in a professional team💪.
You can ask us anything: whether it’s about scarecrows, insults🤦, playing soccer ⚽ or party nights 🎉.
Thank you for your trust!
😍🧡
QUESTIONS Answers
Here are the questions 💬 that we have already received and that we have answered in a professional team 🎤.
Retinoblastoma and driver's license? 🚘
The good news first: even with a certain visual impairment or only one eye, you can usually get a driver’s license!
The legal basis for this is paragraph 12 of the Driving License Ordinance (FeV).
It specifies in detail which requirements must be met for a driving license to be issued.
In addition to the minimum age, sufficient eyesight is a prerequisite for a driving license.
Every applicant must therefore take an eye test.
This is considered passed if the central daytime visual acuity with or without a visual aid is at least 0.7 in both eyes.
This means that both eyes must have at least 70 percent visual acuity – also known as visual acuity.
Overall, visual acuity must not be less than 0.5 in the better eye or in both eyes.
All further information on this can be found in Annex 6 to § 12 FeV.
Driving is only no longer possible with severe visual impairment.
This is the case if the binocular visual acuity or that of the better eye is below 0.5.
With RB-Survivorn, it is not uncommon for such an eye test to be borderline, i.e. the eye test is not passed.
A further ophthalmologic examination is then necessary, in which other parameters are examined in addition to daytime visual acuity.
These include visual acuity, visual field and twilight vision.
Visually impaired people are those with less than 30 percent vision.
Significantly visually impaired people have less than 10 percent vision.
Highly visually impaired people have less than 5 percent vision.
A person is considered blind if they have less than 2 percent vision.
"I'm often sad that I have a RB🤦. Everyone always says: it's no big deal. It is for me. What should I do?"
First of all, we would like to thank you for this question – THANK YOU!
Because we are sure you are not alone with this feeling.
You have a disease and therefore got a glass eye, so it’s normal to feel sad about it sometimes.
You are also allowed to be sad!
When your friends or parents say “It’s not so bad”, they want to comfort you.
But that doesn’t always work, of course.
And because they love you, they also get sad when they see that you are sad.
That’s why they want to ease your pain with such a statement.
The good thing is: the sadness usually doesn’t last that long!
Most of the time you are only sad for a few hours or days (or a little now and then) and then it passes.
If this is not the case for you, then you need to tell someone, preferably a doctor. And if it annoys you that your friends say that it’s not that bad after all, then just tell them: “Yes, it is bad for me right now!” – Then they will understand you better and you might be able to talk about it openly.
This is often very good for a friendship.
With this in mind, we wish you all the best and lots of strength – and thanks again for the question, you’re addressing something that many people are concerned about and don’t dare to ask, and you’ve done it, congratulations!
"I've just fallen in love 🥰 and I don't dare tell my boyfriend that I have a glass eye and had cancer. Should I tell him👫?"
CONGRATULATIONS!
Being in love is such a beautiful thing, you just have to enjoy it.
And we think: the better you understand each other, the more you can enjoy it!
And from our point of view, this includes a good dose of openness in the relationship, which promotes mutual trust.
We would therefore like to encourage you to tell your boyfriend about your previous cancer and that you have a glass eye because of it.
Your boyfriend has fallen in love with you just the way you are – he thinks you’re great and attractive!
Are you afraid that he will leave you because of this?
Well, if he does, then he doesn’t deserve to be with you anyway… Most people are glad that they told their partner and say that he took it well, was grateful for the openness and is probably all the more proud to call himself your boyfriend/girlfriend afterwards, because he will recognize all the more the strong and brave person who has beaten cancer.
Therefore: muster up all your courage and speak up – he will be grateful!
"What do I say when someone asks me directly if I have a glass eye? I'm often caught off guard by the question and would like to have a few cool answers 💪 ready 🚀."
Yes, this is of course a very direct question (which can actually take you by surprise for a moment) – but we can only say: A direct question is best followed by a direct answer (then you might take the other person by surprise and give it back 😉.)
So, gather up all your courage and speak up!
Preferably with a well thought-out answer to such a question.
How about one of our “cool” suggestions?
Or you can add your own cool answers to our list: “Do you have a glass eye?” – YOU: “Yes, of course – don’t you?”
“Tell me, could it be that you have a glass eye?” – YOU: “Yes, of course I have one. Could it be that you don’t have a glass eye?”
“Uh, is that a glass eye you’ve got there? Wow!” – YOU: “Yes, of course it is. It’s really cool, isn’t it!”
Or: “Are you disabled?” – YOU: “Yes, 60%!”
"I play soccer ⚽, I often just see the ball later than others and get frustrated. What should I do?"
Great question.
I’m sure there are many footballers among you who feel the same way.
When something doesn’t quite work out the way you imagined it would, you get frustrated.
This is a completely normal reaction and it’s usually hard to defend yourself against the frustration that arises at first.
But it doesn’t have to stay that way!
It is important to focus on what you can already do or what works well – and not on what is not (yet) working.
Make a list of what you can already do well in soccer (e.g. shooting penalties, short passes, holding the ball up, overhead kicks, etc.)!
I’m sure you’ll add up quite a few things… And every time you learn something new, add it to your list – and it will get longer and longer… Do this for a while and you’ll see that you’ve become really good at soccer.
You can be really proud of every single point on your list!
Congratulations already!
"Last week, my teacher called me an ugly scarecrow 🤢. How should I react🤔?"
(Editor’s note: How stupid can teachers actually be?!)
Well, first of all, I’m speechless and shocked (congratulations, not many people have managed that yet!).
A teacher is not allowed to insult a student, that is not possible and is an absolute no-go!
I hope the teacher has realized that he or she has made an unacceptable insult and has apologized to you immediately.
So I can reassure you: No matter how you react to it, it’s all (almost: a counter-insult wouldn’t be so great, of course) right.
So there is no good or bad reaction to it, because it was simply not right and that should be clear to everyone.
And it seems to bother you to have been so offended, otherwise you probably wouldn’t have written to us.
I’m sorry for that and therefore I apologize to YOU instead of your teacher (forgive the adults, they sometimes behave stupidly too).
Remember: no one is ugly!
Everyone is beautiful, each in their own way.
And you certainly are, I’m very sure of that.
"At parties 🎉 the pupil of my prosthetic eye is always very small because it can't move naturally - it always looks funny because it enlarges in my other eye in the dark... what can I do🕶?"
Answer from an encouraging member of the Dr. Winter team: I also received the odd comment in discos that wasn’t nice, but mostly from girls.
I also received the odd rebuff from guys who claimed they couldn’t deal with my disability, superficial people, today I know what to think of them, but I can advise you, you don’t need people like that!
To all the young girls out there, I can only say: you look beautiful the way you are!
And anyone who can’t see that has no business being by your side!
I met my husband over the Internet back then, he’s a model and I just thought “a girl like me will never get him!” And what can I tell you?
We’ve been happily married for ten years and my disability has never been a problem!
On the contrary, “everyone has one with two eyes, you’re different, you’re special!”
And this is coming from a man who could have the most beautiful women in his industry, but he chose me… enchanted by a magic eye.
Tip: You can also get a second prosthesis for parties – just tell them to make the pupil bigger.
"Can I make jokes about my one-eyedness myself 🙌?"
Jokes?
Of course, why not!
It’s always good to have a sense of humor and it’s better to make jokes about yourself than about others.
And not everyone has something they can make good jokes about themselves (so you have a real advantage with your one-eyedness).
Therefore, if you’re doing well, have a sense of humor and enjoy making jokes about your one-eyedness, go for it.
However, bear in mind that other one-eyed people may not find this quite so great because they may not yet be able to cope with it so well.
Therefore: always use jokes sparingly!
That’s better than letting out joke after joke all the time, which can be annoying for others at some point… Thanks for the great question!
Humor is so beautiful and you seem to have a lot of it.
Everyone at my level talks about my condition and my glass eye, but no one talks to me - what can I do?
How do I behave correctly🤔?
First of all, to your second question: YOU are behaving correctly!
The others are not behaving properly in your case.
It’s not okay to talk about others instead of with them… Actually, everyone should know this and your classmates certainly know it too – but there are sometimes “vibrations” within a class community that can contribute to people not behaving properly, even though they actually know better.
Are there any classmates who you think can understand this (and the feelings it triggers in you)?
I would get in touch with them!
Or a teacher you trust? Actually, the only thing that helps is to go on the offensive and say: “Hey, why aren’t you talking to me? Just about me instead? That’s stupid! I’m here – so talk to me if you have any questions about my illness or my eye!” So offer to talk to the class, then it will certainly be quiet straight away (or they will actually ask with interest) and the “whispering” will stop.
Good luck with this and let us know how you got on – it would certainly not only be of interest to us here, but also to many others who have (or have had) a similar experience to yours.
Thank you very much in advance!
I want to jump off the dime - my ocularist says the prosthesis will break.
But I don't want to be different...🤸
Wow, you want to jump from a ten – that’s quite an undertaking!
If the ocularist says that the prosthesis will break – stupid question: Can’t you jump without it?
Or ask the ocularist if there is a better/other option?
We can only advise you to find out why you want to do this – what is your motivation behind it?
I can hear from your question that you want to be like others and be able to do what you want – that’s understandable, everyone wants that, but it’s not always possible.
Is there an alternative that would put your prosthesis at less risk?
For example, going to the high ropes course, summer bobsleighing, etc. There are certainly many possibilities for you and we are looking forward to hearing what you have already tried out (but please always in agreement with your ocularist) …
I don't know how to deal with it: my parents warned me against drugs, precisely because I've had cancer before.
That's annoying.
Do I really have to be so careful?
We understand that this is annoying!
You’re a teenager and want to try yourself out – all perfectly normal.
But: you’ve already had cancer once in your life.
That’s why you should pay particular attention to your health.
But that’s not so easy, especially as a teenager – the temptations are great, your friends are trying things out.
And you just want to be there.
But before you join in, read the facts.
It’s about you, about your health.
And only you can take care of it and take responsibility.
Ask yourself why you want to take part: Do you want to “belong” like this?
Do you just want to “try it out”?
For example, alcohol:
Strictly speaking, there is no amount of alcohol that can be drunk without hesitation!
Anyone who drinks too much alcohol is doing lasting damage to their health. Studies clearly show that the consumption of wine, beer and spirits can not only lead to addiction, but also have a negative impact on your personal cancer risk.
Smoking is also the most important preventable risk factor for cancer! Smoking not only causes lung cancer, but also a whole range of other cancers.
Why is this the case? Many of the substances contained in tobacco smoke react with the genetic material of cells in the human body. This can lead to changes or mutations that derail or fail to control the growth, division and survival time of a cell.
The cell can then multiply uncontrollably: the beginning of cancer growth.
By the way: even those who smoke very little have a statistically higher risk of cancer than genuine non-smokers.
And e-cigarettes are also considered dangerous! So: think about whether this is your path or whether you should make a self-confident and clear decision against drugs.
You’ll probably be surprised how many people will think it’s pretty great and join you and your path!
Have the courage!
I have my first boyfriend 🧡and I'm unsure how to use contraception.
My parents are always super careful with me.
Preferably just homeopathy - especially because of my history.
But I don't want to suddenly get pregnant either.
What should I do?
Now you have to stand up to your parents.
Just like any other teenager, you have a right to a relaxed and enjoyable sexuality.
And at your age, this is only possible with suitable contraception.
There are many options.
Talk to your gynecologist about the options available to you.
And mention your health history, your concerns and those of your parents.
There is sure to be a good solution for you!
You should make an effort to find a doctor who is deeply familiar with your particular issues and medical history.
And then: enjoy your first great love!
It is something very special.
IMPORTANT FACTS
You have already been diagnosed with cancer once in your life.
That’s why you should pay particular attention to your health 🧡.
It’s not that easy, especially as a teenager – the temptations are great, your friends are trying things out.
And you just want to be there.
And you should too!
But before you join in, read the facts. It’s about you, about your health. And only you can take care of it and take responsibility. 💪
Smoking 🚭 🫁
You need to know this: Smoking is not good for you!
You need to know this: Smoking is not good for you!
Smoking may look cool or make you feel like you belong, but the reality is very different.
Here are some reasons why you should stay away from cigarettes:
- Health damage: Your body is still growing and is particularly susceptible to the damage caused by smoking. Smoking can affect your lung development, reduce your bone density and put a strain on your cardiovascular system1.
This means you get out of breath faster and have less energy. - Rapid addiction: Nicotine has a stronger effect on the brains of teenagers than adults. This means that you can become addicted very quickly1.
Once addicted, it is extremely difficult to stop again. - Long-term consequences: People who start smoking at an early age have a significantly shorter life expectancy. If you start smoking at the age of 14, you could lose over 20 years of your life1.
- Costs: Smoking is expensive.
The money you spend on cigarettes could be much better invested in things that you really enjoy and that are good for you. - Social effects: Smoking can also have a negative impact on your social life.
Many people don’t like the smell of smoke and it can lead to you being ostracized. - Role model function: If you don’t smoke, you set a positive example for your friends and younger siblings.
You show them that you can be cool without cigarettes.
Remember that you are in control of your choices.
Choose the healthy path and leave the cigarettes behind.
Your future self will thank you for it!
Stay strong and healthy!
You want to stop smoking 💪?
You can get help here smoke-free.info
Sun 🔆 🕶
Please only in moderation!
Please only in moderation!
We should all pay particular attention to sun exposure and our skin.
Your risk of skin cancer after you have already survived a cancer is increased compared to the general population.
But don’t worry, you can actively do something about it! Just follow the usual sun protection rules.
If you don’t know them, the internet is full of helpful tips 👨🏼💻!
Go for regular check-ups and have yourself examined and advised by a dermatologist.
Alcohol 🍷🍻 🎉
It's damn hard to give up alcohol in our society as a teenager!
But you should try!
It's damn hard to give up alcohol in our society as a teenager! But you should try!
Did you know that too much alcohol is really bad for your health? Not only can it be addictive, but it can also increase your risk of developing cancer. Researchers have found that around 22,000 new cases of cancer in Germany in 2020 were attributable to alcohol consumption. 😲
Whether you drink wine, beer or spirits, it’s the amount of pure alcohol that matters. The more you drink, the higher the risk of various cancers such as colon cancer, breast cancer, esophageal cancer and many more. Unfortunately, there is no safe amount of alcohol that you can drink without hesitation. 😕
Maybe you can manage to give up alcohol from time to time. That would be great for your health! 💪
CONTACT
Elli's Eyeland
Elli’s Eyeland by KAKS 👋
If you would like to visit us – we would be delighted!
Please register in advance by e-mail.
And: if you would like to write to us, this is our address where all submissions will be processed confidentially.
📬 Dr. Winter, Elli’s Eyeland, Wiesenstrasse 32, 40549 Düsseldorf
RB-World App 👋
The RB-World app in the App Store and on Google Play!
There you can find each other, exchange ideas and collect valuable information.