In this edition – CAUK meets The Queen, latest research developments, member Chris shares his cavernoma journey… and much more! To read our Spring Magazine click here.
‘Lucy has always suffered with the genetic condition Multiple Endocrine Neoplasia Type 1 (MEN1) which has caused her to develop slow growing tumours in endocrine glands which can secrete excess hormones. As a result she has undergone several operations from infancy into adulthood, and suffered nearly a decade of medical negligence when ignored and written off as a hypochondriac when suffering from the symptoms of excess insulin production before she finally got the endocrine referral she had long requested, leading to her diagnosis and further battles before her life-saving pancreatic surgery. AMEND (Association for Multiple Endocrine Neoplasia Disorders) is the patient support group that has supported Lucy greatly since her diagnosis.
It seems likely that the years of excess insulin production (and the Insulin Growth Factor and blood sugar fluctuations that accompany this) have been a factor in Lucy developing a Glioblastoma Multiform (GBM) tumour which was found by MRI in 2012 following seizures. It was initially diagnosed as an ‘atypical’ cavernoma. The MDT did not feel it was a tumour. The neurosurgeon offered surgery, but no likelihood of any reduction in seizures or language processing symptoms, and with the usual associated risks (including deterioration), and left the decision to Lucy. It took further battles to persuade the GP to refer for a second opinion. in the meantime I had found the National Hospital for Neurology and Neurosurgery and identified it as the ‘go to’ place, but it was finding the Cavernoma Alliance (CAUK) that made the crucial difference, as we attended a Forum event in Holborn and in addition to the support and warm welcome from members, received a consensus of advice that a referral to Mr Neil Kitchen specifying ‘CaverClinic’ would be the best course of action. Mr Kitchen was superbly competent, confident, and caring in his assessment, diagnosis, commitment and skills. He recommended immediate resection and carried it out, returning early from his leave to operate after the first planned date was postponed due to the malfunction of the in theatre MRI scanner.
This all explains why I wanted to help these worthy causes. I originally intended to run a half-marathon to raise the money, but my body failed me (maybe in the future). The decision to sacrifice my hair came from friendly cajoling by a few people at work in the run-up to breast cancer awareness day on October 23rd. Others were doing things to raise money for ‘pink day’ and the suggestion was made that I cut my hair. I was not in favour, but realised that there was enough interest to raise some money despite the late decision (2 days before). I did not want to raise money for Cancer Research as we do not really support their approach of funding research into harmful pharmaceuticals that make money for huge corporations and cause many health problems, and they receive huge amounts of money already. However, AMEND and CAUK are genuinely deserving causes that help people at the sharp end in very important ways, but go (relatively) under the radar so to speak, despite sterling work in profile raising. Worthy causes that need my small contribution more than massive established charities. So it was an impulse to lose two years worth of hair.
I offered the chance to hack it off to the highest pledge, and one of the residents at my place of work immediately pledged £20 of his pocket money savings.
Lucy continues to have MRI scans every 3 months and they have all been ‘stable’. Lucy has made dietary and lifestyle changes to reduce her risk of further cancer and though she still has health challenges, is remarkably well given what she has been through.’
“I have always been a keen runner but only ever did up to 5k. In January 2014, I was doing a ‘Park Run’, at the finish, I said to my partner, I can’t see properly my vision is flashing images and then collapsed. This is when I had my first bleed and I was fortunate to be taken to a hospital, where the doctor who saw me, knew what a cavernoma was. He took a CT scan and sent it to Addenbrookes, going with his gut feeling and they confirmed it.
I continued on having bleeds thereafter sporadically and ended up finally having to make decision to having the Cavernoma removed before it did permanent damage or worse. It was in my occipital part of my brain so had its risks in relation to my vision. I had the operation in July 2014, it was very scary but I am extremely lucky that it has had no long lasting effects on me, other than occasional dizziness, tiredness and being prone to seizures.
I had always wanted to run the ‘Great Eastern Half Marathon’ as it was right here on my doorstep but never did it. Everything that had happened gave me a wake up call and I thought, the best time to train for the half marathon is now. I believed it would help my body heal, but also give me something to focus on to help with the recovery. I started by doing small walks after my operation gradually increasing it but also listening to my body and resting when needed. Over time I began running, eventually managing another park run and then continued to break through the tiredness barriers and do a 10k race in June. I continued putting the hours in, little and often, along with doing research on nutrition and completed a 10 mile run in September.
October 11th 2015, half Marathon day arrived. I was very very nervous, unsure if I could complete it, concerned about letting all those people who had sponsored me down. Also my main fear was this would push the tiredness too far and I would have a seizure (as I haven’t had one since the operation – touch wood). It was a great atmosphere all the way round, lots of people cheering, playing music and generally being part of the event. Friends of mine stood at various points round the route which was great as I was counting the miles down until I saw them, giving me something to focus on. It is an extremely tough challenge physically but worse than that it is a mental challenge, I did have conversations with myself along the way round to stop me walking, such things as look how far you’ve come, how blessed you are to be able to do this, think of others that couldn’t etc.
I finished the half marathon in 2hrs 11minutes and 47 seconds, with a huge crowd of friends cheering me over the finish line and no seizures! Such an emotional experience and still floating a bit! Along with a huge personal achievement, I was also able to raise some money for Cavernoma Alliance, who provided me with invaluable assistance and knowledge at the toughest time of my life and I will always appreciate the support they gave me.
I am very lucky and exercise works for me, it has helped me mentally and physically to recover.”
March 2016 is “Together for Cavernoma Month”. The principal aim is to raise awareness of cavernoma in the minds of the world at large. We are asking everyone in CAUK who is able and would like to do so to play a small or larger part in this, and it can be in a host of different ways and to different degrees.
Members and supporters can organise a local event or publicity. Get together with other members or lead an event on your own. A chance to try something different or meet new people while raising awareness for CAUK.
At the large-scale level, we hope to find someone, perhaps more than one person, in every city and town who will try communicating in their local newspaper, their local radio station(s), local TV, county magazines or any output you can think of. It would be very helpful if you could let Angie know if you are willing to help in this way.
We are hoping also that as many people as possible will hold awareness-raising activities to promote “Together for Cavernoma Month”, in whatever way you like, and at whatever scale. And this could be as seemingly “small” as talking to people about cavernoma when an opportunity arises, as well. Our ideas are to bake a cake for cavernoma, arrange for your local pub to run a Cavernoma Month Quiz or get your Park Run to dedicate a run for cavernoma.
Here are our Top 10 Awareness Raising Ideas
1. Have your cavernoma story featured on the CAUK website.
2. Send details of your awareness raising event to your local newspaper or magazine and after the event send a description and pictures of the event.
3. Publicise cavernoma on social media by sharing posts and stories on cavernoma.
4. Make a short video of yourself talking about your cavernoma and post on social media such as Facebook, You Tube, Instagram or Vimeo etc.
5. Volunteer to talk about cavernoma to a local group or organization in your area.
6. Put up a cavernoma poster or leaflet on your work noticeboard, doctor’s surgery or hospital department.
7. Talk about cavernoma to a local radio talk show.
8. Send a text about cavernoma to your friends and add the CAUK website link.
9. If your employer, local club or organisation has a charity of the year scheme, or charity collection, suggest CAUK as a worthy cause.
10. Start a blog about cavernoma. Sites like Blogger or WordPress can be used.
Don’t feel that your organised activities need to necessarily generate funds, since our principle aim is awareness-raising, but we are always very happy for fundraising to be included if you wish.
Also, please do something for yourself during March to celebrate our 10th Anniversary. We would very much like to hear about what you have been doing, and love photographs for our publications.
Cavernoma Alliance UK was started in 2005 by Dr Ian Stuart in Dorchester, Dorset. To celebrate the ten years since the founding of the charity, a series of special events have been arranged from June 2015 to June 2016. The Tenth Anniversary Reception was one of these events and was held in the Dorchester office on Friday 30 October.
In the speeches, Mayor Robin Potter outlined the history of Cavernoma Alliance UK and its growth into a national charity while being based in Dorchester. Oliver Letwin MP, highlighted the support and help the charity has provided for those with cavernoma and future research projects. Ian Stuart, Oliver Letwin MP and Mayor Robin Potter then cut the Tenth Anniversary cake.
Article by Paul Cooper
My story started when I was 13 and my Aunt had a bleed on the brain. One year later my Mum had the same bleed from the same kind of growth – they both had cavernomas. So the Drs advised it was probably genetic. Having been suffering from migraines they asked if I would mind being scanned. A scan showed that I did indeed have a cavernoma and they suspected a certain gene was causing this. So no long drawn out diagnosis – lucky for me. It wasn’t until I was 17 that my cavernoma started to cause problems and started to regularly bleed, causing me various stroke symptoms over the years. It was after my 5th stroke that my surgeon gave me the details of CAUK. Wow! To finally find a whole huge family of other people that were suffering from these things felt amazing. We had felt so alone before this what a find.
My 6th stroke brought with it more symptoms and the option of surgery and genetic testing. The testing showed CCM1 in both myself and my Mum. I can honestly say I don’t know how I would have made the surgery and genetic testing decision without the help of CAUK. I watched the videos from past forums. I attended the forum, and other talks arranged by them as well as discussing options with other members who had surgery or gamma knife or who were making that decision too. I didn’t feel so alone with the decision. I decided 2 things; 1) I was having surgery and 2) I was going to shave my head and raise money for CAUK. So in March 2014 my head was shaved and shortly after I had the surgery.
I have recently started working again, I retrained in between stroke and surgery and I am now self employed with my own little business. Cavernoma and surgery isn’t the end of the world – it’s the start of a new life and CAUK brings many new friends with it. I still keep in touch with the members and staff regularly and love catching up them all at the forums.
Nikki gave two inspiring radio interviews talking about cavernoma and the headshave. One with Radio Verulam (11/02/2014) and another with BBC Three Counties Radio (12/02/2014). CAUK thanks Nikki Evans, Radio Verulam, BBC three Counties Radio and the interviewers for supplying and giving permission to use these interviews.