Learn more about our member Heathers experiences with her cavernoma and epilepsy.
Join our science advisor David White in a new part of his Science of Cavernoma Series, as he discusses how Cavernoma Grow : The role
Was anyone else enjoying the warmer, sunny days and thinking that the frosty mornings were behind us? I even saw a swallow the other day! But true to form, the British weather has brought us back to icy winds and frost-bitten plants. How do we cope with these variations and setbacks? How do we manage thinking that we have got through a tricky period and suddenly find ourselves in a difficult place again?
Matthew Radley was diagnosed with cavernoma after falling seriously ill with a variety of distressing symptoms. He has suffered two strokes as a result of his condition but is determined to live his life with courage and resilience, and wants to inspire others to do the same.
What we think, how we feel and how we relate to other are driven by the way our brains, bodies and minds work together. During this session, CAUK therapist Fiona will explor ehow our brains and bodies search for safety and respond to danger. We’ll talk about emotions and stress and what happens when we feel overwhelmed by danger and experience trauma.
Doctor Ian Kamaly discusses what options there are for screening of both patients with known cavernous malformations and family members who may possibly be affected. He then went on to give a very useful discussion on participation in sport and other activities for patients with known cavernous malformations.
Rare Disease Day was established in 2008 by the European Organisation for Rare Diseases (EURODIS). Rare Disease Day began on 29th February 2008 and selected because it was a “rare day”. CAUK Founder, Ian Stuart comments on why its important to our community.