My CaverVoice Hints & Tips

We are really excited at My CaverVoice to have the chance to create and build a community that can look out for, support and share experiences with each other to live their best life.

My CaverVoice see’s your ABILITIES not disabilities, those raspberries do not rule us.

How do I tell people I have a raspberry in my brain or spine?

It can be hard for people with cavernomas to explain their condition as it’s a little bit special. Did you know that only 1 in 600 people have Cavernomas and for many of them they only find out by accident. It’s only 1 in around 400,000 that have any symptoms, so that makes you pretty rare. Anyway, because it’s so rare even some doctors have to google them, I know mine did!

You might feel that telling your friends, family or other people really daunting, but it needn’t be. You could start by talking to family and inviting them to look at our website. For some people, it might be helpful to ask someone to talk on your behalf or just be there to support you.

Sometimes it’s easier to tackle people individually, as you can get different reactions from different people. I know I found it easier to talk to people once I properly understood what it was myself.

The website here has lots of handy pictures that can help explain it to friends. We often talk about the ‘raspberry in my head’ and it’s true to say that’s what it looks like. Some of them are a little leaky, others behave themselves a little more, but sometime that can affect how you feel and what you are able to do. This is why it’s important to share how it feels for you, as that may be different to how it feels for someone else.

Some young people have opted to have an assembly to tell their friends at school about Cavernoma and how this makes you feel. More importantly, it also shares how they can help you. Cavernoma Alliance has some great packs available for your teachers and other adults to do this.

For me, I chose to go public in a more technical style. Once I understood my diagnosis, I felt it was easier to share my thoughts and feelings at my own pace and through social media. I have a short blog on Twitter where people can follow me and hear about my journey with cavernoma from diagnosis, through the surgery pathway and beyond.

What to do if I feel scared or worried?

If you ever feel scared or worried there are loads of different things you can do!

You could speak to a doctor who can answer any questions or worries you have about your cavernoma! This might also allow you to understand your cavernoma even better!

Speak to one of CAUKS young champions! We don’t bite and we are support you through your cavernoma journey by providing suggestions as to how you explain to friends and family (as that can be a little bit worrying). We can also just chat and take your mind off of cavernoma. Either way we are here to support you!!

And one of the most important things to do is speak to your parents! It is very important to speak to your parents as they are the ones who look after you and they need to know if there is something wrong. For example if you are worried about going to the doctors it is important to tell your parents this as they can sit down with you and explain what will happen!