Author Archive | Michael Nelson

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.

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.

“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.

January Magazine

We’re delighted to share the January 2019 edition of our new look CAUK magazine. To read simply click here.

In this edition we share two exciting opportunities to participate in research as part of our #CaverNoMore 2030 campaign. These opportunities are for people pre-op with a brain cavernoma or for anyone with a spinal cavernoma.

We also remind you of the date for our Annual Forum – 8th June 2019 at the De Vere Horsley Estate in Surrey. We have a number of accommodation options listed on our events page. If you want to stay in the castle do book soon, you have 2 weeks left until they open rooms up.

Not yet a member? Membership is free and will mean you get our magazine emailed to you along with many other benefits. To sign click here.

Best wishes,
Helen, Chief Executive of CAUK

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