Coronavirus cases in the UK have soared to 5,903 with 289 deaths. If you have an underlying health issue, this is a particularly worrying time. But what do you do when you have a rare condition that many people haven’t even heard of, and for which very little research exists?
A cavernoma is a cluster of abnormal blood vessels in the brain or spinal cord, and looks like a raspberry.
Cavernomas can bleed, oozing into themselves or into surrounding brain tissue.
Depending on the location and size of the lesion, symptoms can include seizures, severe headaches, neurological deficits, weakness, numbness and extreme fatigue.
For people with a cavernoma, there is no increased risk of catching the virus.
But it is sensible to take reasonable precautions to reduce the chances of catching coronavirus.
READ MORE: Cavernoma definition: What is a cavernoma? What is the treatment?
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Should you self isolate if you have a cavernoma?
Cavernoma Alliance UK (CAUK) Medical Adviser, Professor Rustam Al-Shahi Salman, said that most people who have a cavernoma are not on the Government’s most vulnerable list.
He said: “Cavernoma is not specifically mentioned as a condition that requires people to have the flu vaccine.
“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.’”
However, he added: “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.”
Professor Salman added the situation will be different depending on the particular individual and the symptoms they experience.
For most people with a cavernoma, the social distancing advice given to the majority of the population will be sufficient.
However, if you have recently had surgery, or your cavernoma causes you symptoms similar to those experienced by people with neurological conditions such as Parkinson’s or Multiple Sclerosis, then you will likely want to be extra careful.
If you are taking medication, and become unwell, it is important to continue taking your medication.
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The CAUK website says:
- 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.
Liz Morgan, CEO of CAUK, said the charity has been forced to cancel a number of key events this year due to the COVID-19 outbreak.
The charity is now looking to support their members and reassure people with a cavernomas.
Ms Morgan told Express.co.uk: “These are worrying times for all charities. The Coronavirus has meant our fundraising has taken a hit.
“Having a rare condition is very isolating for people, so we hated having to cancel our events.
“We know how important they are to people. However, the team are working hard to develop new ways to support people with cavernoma.
“We have some great ideas in the pipeline. If anyone can help with a small donation to keep us going, it’s really easy to donate on our website.”
Top Tips to Keep Your Stress Down
Stay in touch: While limiting social contact in person, use technology to get support from others or just to have a chat. CAUK are planning a series of webinars and online chats to do just that.
Get outside: If you can safely do so, why not go for a short walk, away from others and spend some time in the fresh air and out in nature.
Learn something new: Is there something you have always wanted to do? Learn to draw or paint? Write a book? Play an instrument? Search for free tutorials on YouTube.
Focus on something positive: This is a good time to help others. Small charities like CAUK are in real danger as the usual events for getting sponsorship have all been cancelled. Could you do a virtual marathon? Or a sponsored walk? If you have a step tracker, it can even be done without leaving the house. CAUK Just Giving Page
To find out more about Cavernoma and how you can help, visit the website https://www.cavernoma.org.uk/
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