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.
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.
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.
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
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 firstname.lastname@example.org. We will then send you the details of upcoming webinars along with the links.
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.