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Coronavirus and Cavernoma (Updated)

Updated: 5th June 2020 at 09:56

As the situation with Coronavirus (Covid-19) develops, we all need to be thinking of ways to keep ourselves and our families safe.

For people with Cavernoma, there is no increased risk of catching the virus. However, it is sensible to take reasonable precautions to reduce the chances of catching Coronavirus.

We recommend all follow the current NHS and Government Guidance on sensible precautions to take, such as on hygiene and travel.

Self Isolation Advice

We have been asked whether people with cavernoma should self isolate in view of the Government’s updated guidelines. These stated that people with long term health conditions that would normally require them to have the flu jab, should do so.

Some parents have had letters from school indicating that people with “chronic neurological conditions” should self isolate for 12 weeks. They have asked us if this includes people with cavernoma.

Our Medical Adviser, Professor Rustam Al-Shahi Salman gave us the following direction:

Cavernoma is not specifically mentioned as a condition that requires people to have the flu vaccine (https://www.nhs.uk/conditions/vaccinations/who-should-have-flu-vaccine/#flu-vaccine-for-people-with-medical-conditions).

For most people, cavernoma is not like, “chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy.” But for patients with cavernoma who are impaired in a way similar to patients with the conditions above, it would be sensible to consider the social distancing measures recommended by the Government.

The situation, and decision made by individuals, will be different depending on the particular individual and the symptoms they experience.

Medication Advice

If you are currently taking medication, and become unwell, it is important to keep taking your medication.

  • Regarding anti-epilepsy medication – remember that fever reduces the seizure threshold. It’s important to stay on your anti-seizure medication unless instructed by a doctor to do otherwise.
  • Regarding propranolol – “Beta-blockers are not immunosuppressive agents BUT they can worsen the symptoms of a viral illness such as wheezing.” If you become ill, you should discuss discontinuation with your medical provider.
  • Post-surgical care – those who are recently post-surgical will need to be extra mindful of social distancing and hygiene as you need time to recover. Also, if you’ve been given an incentive spirometer for pulmonary exercise, it’s very important to use it.
  • Blood thinners (antithrombotics). Recent findings have associated Covid-19 with blood-clotting in the blood vessels in the lungs, resulting in consideration being given to the use of blood thinners to treat patients with this virus. People with cavernoma should inform the clinicians treating them for Covid-19 that they have a cavernoma, but there is no evidence to suggest that the use of blood thinners in this context will increase the risk of a bleed in their cavernoma.
  • Note that Angioma Alliance are collecting data from patients with cavernoma who have been tested positive for Covid-19, and if you are in this position it will help our understanding of the interaction of cavernoma with this virus to take part in their survey, for which purpose you can register at http://angioma.org/pages.aspx?content=628&id=477. We encourage you to do so.

Angioma Alliance Webinar

Angioma Alliance, our sister organisation in the USA, held a webinar on 26th March which discusses several issues such as whether there are special precautions to take in the range of situations you might meet. This is available on YouTube at https://www.youtube.com/watch?v=v2rnWgrs13Y&feature=youtu.be

Issues discussed: should I still have surgery, should I still have scans, will a vaccine be safe when it arrives, is it safe to volunteer help, what if I am pregnant.

Research Opportunity

Angioma Alliance are carrying out research into coronavirus and cavernoma.

This is open to people who:

  • have a cavernoma
  • have had a positive test for Covid-19

If this is you, and you would like to register to take part you can complete a form here http://www.angioma.org/covid

Events

As the country moves carefully out of lockdown, we need each other and our community, to help us as we deal with the situation as it changes each week.

Our webinars and virtual chats have proved immensely popular. So much so that we plan to continue holding these in the months ahead.

Webinar Plan for June and July (may be subject to change)

  • 11 June: Cavernoma from a Teenagers Perspective,  Hannah Thompson
  • 16 June:  European Conference on Rare Diseases, Jane Bergholt and David White
  • 25 June: Member Success with a PIP Application Q&A, Kathryn Douthwaite
  • 30 June: They said no, I said Yes! Will Sears
  • 7 July: Guided Meditation with Ginny
  • 9 July: Starting over “A new beginning after being diagnosed with Cavernoma”, Fiona Frise
  • 16 July: Monthly Coffee and Chat, Tracey Hammond
  • 23 July: Cavernoma Genetics, David White and Pat Spallone
  • 30 July: Coffee and a Chat, Paul Davis

For security reasons, we are not putting the direct links on here. To register your interest in the webinar series, please email events@cavernoma.org.uk. We will then send you the details of upcoming webinars along with the links.

These events are currently being run through Zoom. If you’ve never heard of it, or need to know how to install it on your device, check out the helpful information from our IT Support How to Use Zoom

Annual Forum May 2020

The annual forum 2020 was run as a virtual conference this year, and was a huge success. We have three excellent session with international speakers. The videos are available on our YouTube Channel.

Mr Chris Chandler, Consultant Adult and Paediatric Neurosurgeon at King’s College Hospital, London discusses Treatment of Brain and Spine Cavernoma at the Cavernoma Alliance UK Annual Forum

Professor Issam Awad, an internationally recognised leader in neurosurgery, at the University of Chicago talks to Cavernoma Alliance UK about Milestones and The Road Ahead. He has a particular interest in the surgical management of neurovascular conditions affecting the brain and spinal cord.

Dr Anita Rose, Consultant Clinical Neuropsychologist at The Raphael Medical Centre, and a Trustee of Cavernoma Alliance UK, delivers a talk at the 2020 Forum on Managing Neurofatigue.

What will we do instead?

We have some exciting talks and presentations planned for you, and we don’t want you to miss out. Therefore, we are busy arranging for the sessions to be held Virtually. As soon as we have the details in place, we will let you know how to sign up to the virtual sessions.

Like you, we are very disappointed not to be meeting you all in person this year. But we have a responsibility to each and every one of you and we wish to fulfill that with care. The virtual conference will be an exciting venture, and will pave the way for future webinars that will be available to everyone, regardless of whether or not you can travel.

What about next year?

We know how valuable it is to meet in person, and will plan to hold these events, as normal, next year.

We will update this information as the situation progresses.

CARE Pilot Trial Announcement

The Cavernomas A Randomised Effectiveness (CARE) pilot trial

CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in cavernoma, led by our Medical Advisor Professor Rustam Al-Shahi Salman. The collaboration has been awarded £973,835 from the National Institute of Health Research (NIHR) to run the CARE pilot trial to find out whether treating brain cavernoma with neurosurgery or stereotactic radiosurgery (often known as Gamma-knife radiosurgery) is more effective than not using these treatments, in addition to treating symptoms. This pilot study will investigate whether it will be possible to do a much larger CARE main trial. We aim to recruit patients into the CARE pilot trial from the spring of 2021 onwards. This has been a long journey involving CAUK from the outset as described below.

Background

The main aim is to find out whether treating a symptomatic brain cavernoma directly with neurosurgery or stereotactic radiosurgery (known as ‘active treatment’) is more effective than not using these treatments (known as ‘conservative management’) in addition to treating symptoms.

Guidelines 2012

A study sponsored by CAUK jointly with Genetic Alliance UK in 2012, and the work principally of Ian Stuart working with Rustam Al-Shahi Salman, titled “Guidelines for the management of cerebral cavernous malformations in adults” concluded that there was no robust evidence to help clinicians and patients decide whether active treatment or conservative management is more effective for cavernoma.

What was required were randomized controlled trials (RCTs) comparing different approaches to treatment. At that time, and still today, there were three options (i) neurosurgery to remove the cavernoma via a craniotomy or spinal surgery, (ii) gamma-knife radiosurgery in which the cavernoma is zapped with radiation and (iii) conservative management which avoids (i) and (ii). In all groups, symptoms are treated with e.g. antiepileptic drugs for epilepsy/seizures if required.

Priorities for Research into Cavernoma (2016)

RCTs are expensive and, in order to justify the expense, potential funders, principally the National Institute for Health Research (NIHR), require evidence that the research being proposed is seen as a priority by both patients and clinicians. For this reason, CAUK undertook a “Priority Setting Partnership (PSP)” within the rigid guidelines of the James Lind Alliance, an organisation set up for this reason. The £25,000 funding for this was largely funded in a special appeal to CAUK members. This resulted in a report (Priorities for Research into Cavernoma) which gave a list of the top ten such priorities (and a subsidiary list of the next seventeen) of which the top was “Does treatment (with neurosurgery or stereotactic radiosurgery) or no treatment improve outcome for people diagnosed with brain or spine cavernoma?” and this is the formal question addressed in the CARE trial.

A randomised controlled trial (RCT) to answer the top priority

Since 2016 CAUK has worked to support Rustam in his preparation of getting funding for a RCT to answer the above question. This has involved two surveys of our members to ascertain if they would, in principle, take part in such trials, the NIHR commissioning research to address this uncertainty, Rustam leading our consortium to apply for this funding, and the NIHR awarding funding to our consortium.

Pilot RCT

The main issue concerns whether a sufficient number of patients with symptomatic brain cavernoma will take part in the trial. This uncertainty means that the programme being funded is a pilot RCT to see whether the full-scale RCT is feasible. The QuinteT research group is working with us to understand what influences doctors’ and patients’ decisions to take part when they are approached about the CARE pilot trial. This pilot RCT aims to recruit at least 60 patients, and the results will tell us how many patients might be needed to answer the question and whether it will be possible to recruit these patients in a reasonable timeframe.

The “Plain English Summary” section of the CARE trials application

Background

A cavernoma is a cluster of blood vessels that form blood-filled ‘caverns’ in the brain that look like a raspberry. Cavernomas can bleed into the brain and cause a stroke. Cavernomas can also cause a seizure or epilepsy. These symptoms may lead to disability, handicap and occasionally death. About 160 people in the UK each year are diagnosed with a cavernoma that has caused symptoms. In standard practice in the UK, about one fifth of people with cavernomas have ‘active treatment’ with either brain surgery to remove a cavernoma or stereotactic radiosurgery to treat it with radiation. These treatments themselves can cause death, disability, and handicap.

The pros and cons of active treatment or avoiding it by just treating the symptoms (also known as ‘conservative management’) are finely balanced. The most reliable way of finding out which management is best is to do a randomised trial, in which suitable patients are allocated to active treatment or conservative management at random. This has never been done with cavernomas, and this was the top priority identified by a Priority Setting Partnership for cavernoma.

Aim

The NIHR wants research to be done to find out whether enough patients can be found for a randomised trial comparing ‘active treatment’ with ‘conservative management’ of symptomatic cavernomas. We need to know this because cavernomas are rare and we do not know whether patients and doctors will take part.

Design and methods used

In three years we will:

  1. Create a network of specialists to do this study. We will include the UK and Ireland patient support organisations for people with cavernoma (Cavernoma Alliance UK) and doctors representing the relevant specialties at all the major hospitals specialising in decisions about cavernoma treatment in the UK and Ireland.
  2. Invite newly diagnosed patients to join a pilot phase of a randomised controlled trial. Of 190 people diagnosed with brain cavernoma in 18 months, we estimate that 60 of them will enrol in the randomised trial. We will study why some patients take part in the randomised trials and others don’t. We will use this information to change the methods of the trial if recruitment to the randomised trial goes slowly.
  3. Estimate whether enough patients can be found for a full-scale randomised trial to be done to find out whether active treatment or conservative management of symptomatic brain cavernomas is best.

Patient and public involvement

We involved people with cavernoma, carers, and representatives of Cavernoma Alliance UK in the design of this application. We held a focus group meeting with patients and carers on 6 July 2019: all approved the design of the project and the extent of patient and public involvement. The focus group wanted the trials to be as inclusive of patients as possible. The focus group recognised how the project would benefit from them contributing their ‘lived experience’ of brain cavernoma. People with cavernoma, carers, and representatives of Cavernoma Alliance UK will also keep an eye on the research by forming an advisory group and meeting regularly to discuss the research. Two representatives of this group will join and advise the steering committee.

Dissemination

We will publish our findings in medical journals. We will work with Cavernoma Alliance UK to produce a plain English summary and circulate it to patients via newsletters, email, the web, and social media.

Videos from UK Forum 2020

The annual forum 2020 was run as a virtual conference this year, and was a huge success. We have three excellent session with international speakers. The videos are available on our YouTube Channel.

Mr Chris Chandler, Consultant Adult and Paediatric Neurosurgeon at King’s College Hospital, London discusses Treatment of Brain and Spine Cavernoma at the Cavernoma Alliance UK Annual Forum

Professor Issam Awad, an internationally recognised leader in neurosurgery, at the University of Chicago talks to Cavernoma Alliance UK about Milestones and The Road Ahead. He has a particular interest in the surgical management of neurovascular conditions affecting the brain and spinal cord.

Dr Anita Rose, Consultant Clinical Neuropsychologist at The Raphael Medical Centre, and a Trustee of Cavernoma Alliance UK, delivers a talk at the 2020 Forum on Managing Neurofatigue.

Fundraising with Sonal Abram, “Sonal Desai Dishes”

CAUK member and passionate cook, Sonal Abram has written an Indian-Italian fusion cookbook “Sonal Desai Dishes“.

After recently seeking help from CAUK, Sonal has benefited from valuable information, support and community that our charity provides – and now she wants to give back! As a way of raising funds to help us continue the work that we do, Sonal has decided that she will donate £2 of every purchase of her cookbook to CAUK.

To purchase the book, and contribute to her fundraising efforts, simply go to http://www.sonaldesaidishes.uk/buy-the-book and add “CAUK” after your name.

Of her recent experiences Sonal says;

I am very happy to be part of the CAUK, what a wonderful charity providing so much awareness about cavernomas to the medical profession as well as the general public. I have had cavernomas for a number of years, but only recently had a more serious experience, and this is what led me to seek out CAUK as a source of support and guidance. I have really enjoyed participating in the great webinars that CAUK runs with its members, and have valued hearing about other members’ experiences and getting some brilliant talks

About the Book

The book, Sonal Desia Dishes, includes a blend of many different cuisines, including pasta, buckwheat and bulgur wheat recipes, that use Indian spices. Her family favourite recipes are Baked pasta with orange lentils, Paneer makhani, Chole puri, Bhindi, Dosa and Quinoa rocket salad. She hopes people of all ages will be able to enjoy these recipes, as her intention is to increase knowledge of healthy but highly enjoyable foods.

About the Author

Sonal lives in Cambridge where she started a number of vegetarian cookery classes. She started to teach cookery as an evening class when she worked at Cambridge University, and her first batch of students were her colleagues from her laboratory!
She truly loves teaching cookery, and has been invited to many cooking demonstrations. She has also run various Saturday workshops and cooking demos for various charities and summer festivals.

We are so grateful to Sonal for this fundraising initiative.
Thank you for your purchase!

“Caver-no-more 2030” Essay Prize for 2020

“Caver-no-more 2030” Essay Prize

Sponsored by the Ernest Hecht Charitable Foundation
We are delighted to announce that Cavernoma Alliance UK (CAUK) is holding its annual “Caver-no-more 2030” essay prize for papers on anything related to cavernoma, with an award of £500 for the winner.  This essay prize is part of CAUK’s “Caver-no-more 2030” strategy with an ambitious goal of finding a cure for this debilitating condition by 2030.

The terms and conditions for the prize are as follows:

  • Open to trainees in clinical neuroscience specialties or early-career clinical/laboratory researchers working in the UK;
  • Approximately 3000 words in length excluding references, figures or tables;
  • To include original unpublished material or observations;
  • Declaration required from applicants stating they have performed most (i.e. more than 50%) of the work, with a letter to this effect from their Head of Department;
  • Submission deadline of midnight on 1st September.

All entries to be sent to Liz Morgan (CEO of CAUK) liz@cavernoma.org.uk. We very much look forward to receiving your submissions.

The winner will be determined by a panel of clinicians and researchers. The winner will be awarded their prize at the Cavernoma Alliance UK CaverHub in November 2020.

About Cavernoma Alliance UK

Formed in 2005 CAUK is a charity representing the 1 in 600 people with an asymptomatic cavernoma and the 1 in 400,000 people who are first diagnosed with cavernoma each year. CAUK is a member led organisation run by and for those impacted by the condition, their carers and friends.  The charity works from a model of empowerment, recognising the value of members’ lived experience providing mutual support; promoting awareness; and driving research into finding a cure. As a charity we exist for members at every point in their lives, providing holistic person-centred support.

Rainbows for the NHS

It’s time to get creative!

We’re hosting an ART COMPETITION to raise funds to SUPPORT NHS frontline workers during this pandemic.

How it works;

We want you to get your creative juices flowing to create ONE A4 PIECE with the theme ‘RAINBOWS FOR NHS’.  This can be created using ANY medium you like – watercolours, colouring pencils, line drawing, oil pastels, digital art – whatever you fancy!

The competition is open to anyone and to ALL ages – kids, teenagers, uncles, pets etc.

Your artwork MUST include an NHS RAINBOW – but other than that, we encourage you to be creative and think outside of the box!

The staff at CAUK will select our four favourite entries and then its over to YOU, our lovely members, to vote for your two favourites.

The two winners will have their creations turned into greetings cards, featuring the artist’s name on the back, which we will then be selling online. Winners will also receive a £10 Amazon Gift Voucher.

We want to do our bit to support the hard work of our NHS frontline workers who are working relentlessly to keep the nation healthy, and so 100% of the proceeds will be donated equally between CAUK and NHS frontline.

All you have to do is get creative and send your entries, along with your full name, to events@cavernoma.org.uk BEFORE 5PM on WEDNESDAY 15TH APRIL.

Thank you in advance to everyone for getting involved for this very worthy cause – we appreciate it.

Have fun!

CAUK Conquers Everest

You all do an incredible job raising funds and we are extremely grateful. But so many of the usual methods have been taken away from you, and charities are facing a 40-60% drop in income. What can be done? Let us know of any ideas you have, but we also want to start here and now, with us…

Our wonderful Administrator, Sian Oliphant, has come up with a truly horrible idea! She thinks the staff should do a sponsored team mountain climb. As we can’t leave the house, she tells me we can do this virtually at home, using our stairs. Apparently 58,070 stairs is the equivalent of climbing Everest.

 

We’ve decided to start with the Three Peaks, and build up. Three Peaks in 7 days! If you would like to sponsor us go to https://www.justgiving.com/fundraising/sian-oliphant1

 

Chat and Catch Up Volunteers

The NHS is running an excellent scheme, pairing up volunteers to call or message people who are self isolating at home. We would like to do the same, specifically for people living with Cavernoma, using volunteers who understand the condition.

Would you like to volunteer to help? Or would you like someone to contact you for a catch up each week? Let Tracey know by emailing tracey@cavernoma.org.uk.

Summer Magazine

£1 million research application submitted, £10k award from the National Lottery Community Fund and more! To read click HERE.

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