On the 25th September 2019 I had a bleed on my brain and a seizure. As a result I diagnosed with a symptomatic Cavernoma! 

A cava what??  Yip that was my reaction too. Referred to as 'raspberries' because of their appearance. They are made of lots of weak thin- walled blood vessels, clumped together, forming 'caverns'. They can leak blood, ranging from just half a teaspoon of blood to severe haemorrhages. They can vary in size, and location, these factors are major contributors in how they affect each different patient in a different way. They are most commonly found in the brain or spinal cord. 1 in every 600 people will have a cavernoma, which they may never know about, because they are asymptomatic, or found coincidentally. Experiencing symptoms from a cavernoma is much rarer, roughly just 1 person in every 400,000 people have a symptomatic cavernoma. (Makes me sorta special and unique really 😀!)  Fortunately they are NOT cancerous. Some are genetic, but mainly nobody knows what causes them. I have been advised mine is unlikely to be genetic, and pray it isn’t. They can cause side effects, such as headache, dizziness, slurred speech, double vision, balance problems, tremors, weakness, numbness, tiredness, memory problems and difficulty concentrating, to seizures, and a type of stroke called a haemorrhagic stroke, which can be fatal. 🧠. I went straight to the end of that list, with no awareness of it! 🤷‍♀️

I have a symptomatic cavernoma in my front left lobe. I say that as if I’m the proud new owner of a new bike 🚲 😁. It’s a rare disease / condition. My main aim is to raise awareness of this rare disease and to collect some pennies as I go. 

The funds donated, I have request are used to focus on providing a support network, specifically for children and siblings of those with Cavs.

And to go towards any research that supports identifying what causes a Cav to bleed. 

Brains shouldn’t bleed! 

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