CADASIL - some background and my experience so far
Hi everybody,
On Friday morning, 16 June 2006, I was told by my neurologist that I have CADASIL (see Strokesaurus). This came as no surprise to me - it was news that I had been expecting for some years and, really, it was only confirmation of what I intuitively knew to be true.
In November 1998, my mother had a stroke. Scans found neither a clot nor a bleed in the brain were responsible for what had happened. Rather, an occlusion of one of her tiny arteries in the sub-cortical region of her brain seemed to have caused her stroke. Her neurologist suspected a rare neurological disorder as Mum, along with the occlusion, also had an unusual amount of white matter in her brain, and in a pattern characteristic of this particular disorder.
A skin biopsy was arranged and within two weeks, a diagnosis was confirmed - CADASIL.
Our family was distraught, bewildered, fearful. At the time Mum was diagnosed in late 1999, CADASIL was thought to affect only 400 families in the world. And the path and nature of its progression was thought to be inevitable and unswerving. There were likely to be more minor strokes, each of which would lead to gradual declines in her cognitive abilities. These episodes would cumulatively mean the development of dementia and an early death. Additionally, other deficits were likely, including loss of bladder control and her ability to walk unaided.
One particular symptom, that occurs in around 40% of those with CADASIL, troubled me greatly - migraine with aura. I was 34 years old when Mum was diagnosed and by then I had been having severe, unexplainable migraines with aura on a regular and frequent basis for eight years. Although I had none of the usual risk factors that would increase my risk of having a stroke (I didn't smoke, didn't drink to excess, walked for 20-30 minutes most days, my weight and cholesterol levels were good), I was soon suspecting I had CADASIL.
MORE TO COME.