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.
My name is Pete and I have a left temporal Cavernoma. This was found as an incidental finding after an MRI for another reason. There is much more to my story and so I shall start at the beginning.
As many of you will know, friend and member of CAUK, Marvin Morgan sadly passed away at the end of 2021 due to complications from
We are really happy to announce, however, that we have been awarded a very generous sum of £5000 from The Edinburgh Neurology Fund, part of NHS Lothian Charity.
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.
The team at CAUK, along with our medical advisors, have been working behind the scenes to create brand new Public Information Leaflet (PIL), with the aim of educating patients, clinicians and the general public about cavernoma.
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.
Lauren was diagnosed with cavernoma in her lower right cebellum after suffering multiple debilitating migraines. She was forced to have brain surgery which was successful. Lauren suffered a lot emotionally but was able to go back to her degree and, just last year, she took a leap set up her very own Performing Arts studio. An inspiration!
Cavernoma is a rare condition for which research is relatively young. Most people haven’t heard of Cavernoma until they, or someone they know, is affected. Being diagnosed with a condition you have never even heard of makes this difficult time all the more daunting and overwhelming. The more we share about Cavernoma and our experiences of Cavernoma the better the quality of care and support we can offer those affected in the future.
Whether you are a big company or a small business we would love to hear from you. Never had an office/company charity before? Choose CAUK as your fist!
Contact us today to help us raise awareness of our rare disease and support the cavernoma community.
PO Box 366
Watlington
Oxfordshire
OX10 1GF
Registered Charity 1114145
Scottish Charity SC048458
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