Important update on COVID-19 Vaccine can be seen here.
As the situation with Coronavirus (Covid-19) develops, we all need to be thinking of ways to keep ourselves and our families safe.
The situation, and decision made by individuals, will be different depending on the particular individual and the symptoms they experience.
Our Medical Adviser, Professor Rustam Al-Shahi Salman gave us the following direction:
“Some people with cavernoma may be at moderate risk from coronavirus. People who are at higher risk, and advice for people at high risk, are described on the NHS website here. People at moderate risk from coronavirus include people who have a condition affecting the brain or nerves (such as Parkinson’s disease, motor neurone disease, multiple sclerosis or cerebral palsy). Patients with cavernoma who are impaired in a way similar to patients with these conditions should consider the advice for people at high risk (shielding).”
There is specific advice concerning children with cavernoma within the above website, see:
https://www.nhs.uk/conditions/coronavirus-covid-19/people-at-higher-risk/advice-for-people-at-high-risk/
We recommend all follow the current NHS and Government Guidance on sensible precautions to take, such as on hygiene and travel.
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.
- Vaccine update can be seen here
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