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It’s almost time for our 9th annual CaverFamilies Residential!

We are so excited to be packing our bags and getting ready for our 9th annual CaverFamilies Residential this weekend!
Our annual three-day residential retreat is a unique opportunity for families affected by cavernoma to connect, share experiences and spend some good fun, quality time with people who truly understand each other.

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Top tips to manage your cavernoma during the heatwave

The government has issued a Level 4 alert in anticipation of some of the hottest temperatures ever recorded in the UK, with highs of 40° possible in parts of England.

Many of you will already be feeling the effects of the soaring temperatures.  Unlike many Brits who welcome the heat, those with cavernoma often find that hot weather worsens their symptoms and makes their condition even harder to mangage. 

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Catch up on our Forum 2022

We had some great cavernoma-expert guest speakers with us on the day, and the feedback has been great!  We know that not everyone in our community was able to attend, and we understand that many of you find it easier to watch the talks at your own pace – and so we’ve uploaded the recordings of the three main talks to our Youtube channel.

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Lindsay’s Story: Cavernomas in the Brain and Spine, & CCM1

In 2011 I had a bleed from a Spinal Cavernoma. At the time I had never heard of this rare disease. I had never had any health problems. My symptoms started with a tingly feeling down my left leg. I also went for a bath and my left leg didn’t feel the temperature. I was diagnosed with 1 Cavernoma in my spinal cord and 3 small Cavernoma’s in my brain.

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