What some of our members say…

CAUK and all its members have made me feel ‘normal’. I am among people who know exactly how I feel. It’s as simple as that. I am not a person with a rare condition here, I am part of a group of people with the same condition. In real life I might never meet someone with a cavernoma,but here everyone has one/many. So I’m not an oddity here.

Lorna, Scotland, CAUK member since November 2014.

I think CAUK is wonderful for the support its members give to each other and the information it supplies, it means you don’t feel so isolated. Thank you Ian, and thank you to your team  and also all members of CAUK.

Margaret, Devon, CAUK member since July 2013.

To be fair, I would have been lost without CAUK and Ian when we found out originally. Knowing you were not alone was the biggest help. And St Ian, enough said.

Bryan, County Cork, Ireland, CAUK member since February 2010

My family give me all the love and support I could wish for, but only my CAUK ‘family’ share a true knowledge and understanding of living with a cavernoma…thank you.

Belinda, Hartwell, Northamptonshire, CAUK member since January 2011

I was diagnosed 17 years ago and I felt so lost and alone for 15 years of them. I thought my family were the only people in the world dealing with this. Thankfully I got referred to a lovely surgeon who told me about CAUK. I no longer feel lost and confused. What a valuable resource.

Nicola, Watford, CAUK member since November 2011

CAUK has been the best source of information and support for me since being diagnosed. I’ve learnt so much about the condition and the symptoms we all experience. But I’ve also made a great group of friends who are always there to support each other and pick each other up on those frequent bad days. The Facebook group has helped me not to feel so isolated and I can’t thank everyone enough at CAUK for all the hard work they do.

Catherine, London, CAUK member since November 2013

Our family would be lost if we hadn’t discovered CAUK. CAUK has given us valuable information from the website, leaflets and forum. Advice from other members who have been in a similar situation and most importantly for us as a family is getting the opportunity to meet, speak and share experiences with other families facing similar problems through the CaverFamilies residential weekend, and CAUK’s facebook group. I hadn’t met anyone who was aware of this condition before my son was diagnosed with having multiple cavernomas, so without CAUK none of the above would be available to our family and I can’t imagine how much harder things would be. My family can’t big CAUK up enough.

Emma, Glenrothes Scotland, CAUK member since May 2013

I discovered CAUK in 2011 when I was, what I thought, stuck in Australia with this illness. I couldn’t quite believe someone out there (and more importantly back home) understood me and sympathised with my condition. When I emailed Ian, my response was like that of a friend who actually cared about how scared I was, sick and a long long way from home. CAUK got me through my time in Australia and has been there for me ever since I got home. If ever there’s a friend who I can turn to its CAUK and its members.

Emma, Doncaster, CAUK member January 2012

I use facebook mainly for keeping up with friends all over the place but I do know that this page and the cavernoma chats bring me both information in my ignorance that I wouldn’t always get and more importantly support and the knowledge that I am not on my own in fact you all give me a lot of help.

Irene, Scunthorpe, CAUK member since January 2013

CAUK has been a source of the best information on living with a cavernoma. I really needed it from the point of diagnoses as there is nothing else like it. Not only do you get the knowledge you need but you also get the empathy and compassion needed for your emotional support. The Facebook page also allows for moral support and a place for people to reach out for help…. Thank you for being there for us.

Suzy, London, CAUK member since January 2011

I was diagnosed before Ian (founder) started CAUK and the American site was helpful, but they talked about things which didn’t seem applicable to me, because their healthcare system is so different. With many conditions there are lots of places to find help and information but with cavernoma it’s not so easy. Friends and family can be supportive but don’t fully understand the fears, symptoms and feelings we experience. CAUK allows us to explore all these issues with others in a similar situation and that is invaluable.

Emma, Grimsby, Lincolnshire, CAUK member since January 2005

CAUK is incredible. It provides invaluable support online, an informative website with vital information, access to professional opinions and face to face meetings at events, amazing lectures and the opportunity to meet others who have experienced cavernoma. A world without CAUK doesn’t bear thinking about!

Abi, Walton-on-Thames, Surrey, CAUK member since July 2012

After being diagnosed last May, which was a quick 15 minute conversation with a neurosurgeon I wasn’t even expecting to see, I did not get to see another medical professional until December. Without CAUK I would have found that time period extremely stressful. It is only through CAUK that I have found access to the relevant information I required, but more importantly it put me in contact with others with this condition. All of the questions I, and my family had were able to be answered. Without CAUK I know I would have struggled with lack of information and support. I would have been concerned about every head pain or dizzy spell. I would not be without CAUK.

Louise, Stoke on Trent, CAUK member since May 2014

Finding CAUK is like being thrown a lifeline when your sinking in the ocean and overwhelmed. It has helped create the feeling that through shared experience we can learn to live and thrive despite our difficulties.

Heidi, Lichfield, Staffordshire, CAUK member since January 2014

CAUK empowers me to make informed and educated decisions about my life which gives me a sense of security and confidence going forward. Through signposting, advice and community CAUK has been a much needed support during oftentimes unsettling experiences. CAUK enables me to directly access peer to peer support which would otherwise be out of sight. It is within this shared experience I have found a vital provision of emotional support which has enabled me to deal with sometimes negative experiences and feelings and most often times process them into the most positive outcomes achievable. I cannot speak highly enough of the CAUK team.

Mark, Lichfield, Staffordshire, CAUK member since January 2014

It is so easy to feel alone out there, but with CAUK you don’t. You feel that because you have a diagnosis you can speak with like-minded/bodied people. CAUK has been a great source of comfort and reassurance that I now have, I don’t know who I would turn to otherwise. Thank you CAUK!

Bernadette, CAUK member since February 2014

I want to say how invaluable I have found Cavernoma Alliance UK and its forum. The support of the charity is very impressive and important to patients, family and friends. The charity has certainly helped me and I have no doubt that the information it has provided plus support has ensured I am more informed of the condition and its effects which in my case were very serious as I had a stroke too.

Sarah, Greater London, CAUK member since January 2015

CAUK has provided much comfort and reassurance during my darkest moments. It is highly informative and accessible and has enabled me to deal more effectively with my diagnosis. I feel that via CAUK I have made new friends who I now call my “Cavernoma Family” – you are all a constant source of inspiration and support. There have been many painful experiences shared but stories revealing great courage, determination, humour and smiles along the way too! Thank you CAUK – you have made my ongoing journey that bit easier – I do not know what I would do without you!

Danielle, Swindon, CAUK member since September 2014






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