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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.

Summer Magazine

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

Announcement of Caver-no-more 2030 Essay Prize

Announcement

We are delighted to announce that Cavernoma Alliance UK (CAUK) is launching the “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 being launched as part of CAUK’s “Caver-no-more 2030” strategy with an ambitious goal of finding a cure for this debilitating condition by 2030.

In addition to the cash prize the Editor of the British Journal of Neurosurgery will review the paper and, if considered to be of an acceptable standard, will publish the article.  The winner will also have an opportunity to present their paper at a SBNS meeting.

The winner will be determined by judges from the SBNS and the editor of the BJNS.  The winner will be awarded their prize at the International Cavernoma Alliance UK Forum on the 8th June 2019.  The entry criteria for the prize are as follows:

  • Open to trainees in neurosciences or recently appointed consultants;
  • 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 Sunday 17th March 2019 at the end of Brain Awareness Week, with all entries to be sent to our CAUK Founder and Expert by Experience Coordinator Dr Ian Stuart info@cavernoma.org.uk. We very much look forward to receiving your submissions.

 

About Cavernoma Alliance UK

Formed in 2005 CAUK is a charity representingthe 1 in 600 people with an asymptomatic cavernoma and the 1 in 400,000 people who do experience symptoms from their cavernoma. CAUK is a member led organisationrun 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.

 

For more information

More information can be found at www.cavernoma.org.uk, Twitter @CAUK1, Facebook @CavernomaAllianceUK and YouTube www.youtube.com/channel/UCbrM_Z0pdwt3xTGu-8BZ_Ww.  

 

Angioma Alliance hosts 14th CCM (Cerebral Cavernous Malformation) Scientific Conference

On the 8th and 9th November 2018, over 100 researchers, clinicians and pharma representatives from 5 continents are in attendance at the 14th Annual CCM Scientific Meeting searching for better treatments and a cure.  This important conference brings together world leading experts on Cavernoma, through whose collaborative efforts we hope in time will us to finding a cure for Cavernoma.

Following on from this is the Angioma Alliance National Patient Conference.  Sessions from this part of the conference are filmed and available on Angioma Alliance’s You Tube Channel, which can be found here.  Cavernoma Alliance UK is really please to have been invited to attend both meetings.  CAUK is being represented by its former Chair Dr David White who will be briefing members on his return.  Membership is free.  To sign-up click  here.

A warm welcome to Cavernoma Alliance UK’s new Chair, Dr Caroline Seddon

On the 19th October 2018 the Cavernoma Alliance UK Board elected Dr Caroline Seddon to be their new Chair, taking over from Dr David White who we’re pleased to say will be staying on as a Trustee.

Dr Seddon joins CAUK with substantial executive and volunteer experience in the charity, membership, higher education and research sectors. She is National Director of the British Dental Association, Wales; responsible for the strategic furtherance of BDA policies and promoting the interests of dentists, including by political lobbying. Dr Seddon was previously Chair of Breast Cancer UK, having been a Trustee for over five years. She was also a lay advisor at the Royal College of Pathologists and is now a lay member at the Board of Intellectual Property Regulation Board in London.

Much of Dr Seddon’s earlier career was in Higher Education with several senior roles including Head of Science & Education at the British Medical Association London, and Dean of School of Computing and Academic Studies at the British Columbia Institute of Technology. On returning to the UK, Dr Seddon was appointed Director at the National Childbirth Trust with a remit for publishing, education, training and research..

Dr Seddon retains a strong interest in applied human nutrition, which is the subject of her bachelors degree; and pharmacology, which is the field within which she did her doctoral thesis. Dr Seddon hopes to bring her cadre of skills and knowledge to CAUK for the development of the charity and its services to members; and to help in our understanding of the causes and treatment of cavernoma.

We are really excited to have Dr Seddon as our new Chair. We extend our heartfelt thanks to Dr David White for his service to date as Chair. In that time the charity has grown significantly reaching over 2,000 members impacted by cavernoma. We are pleased to say Dr White will be staying on with CAUK as a Trustee and is supporting Dr Seddon through her induction.

“I would like to pay tribute to my predecessor, Dr David White, who has done a tremendous amount to develop the charity into what it is today; and to its Founder Dr Ian Stuart, who has inspired me greatly. I look forward to meeting members over the next few months and to learn about their hopes for the charity in the future.”

Dr Seddon can be contacted at chair@cavernoma.org.uk and will be attending our Christmas Party, which will be held on the 8th December in Central London and open to all members and their families and friends. Membership is free. To join go to www.cavernoma.org.uk/sign-up.

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