I do. I value the support network on Facebook: CADASIL Support. We are like a family there. If you have CADASIL, join us!

Most patients with cadasil experience pain in the head with headache, or migraine.

CADASIL (Cerebral Autosomal Dominant Arteriopathy with Sub-Cortical Infarcts and Leukoencephalopathy) is a rare genetic, degenerative neurological syndrome that causes migraines, strokes and dementia.

If you have CADASIL, there is a great support group on Facebook called CADASIL Support! Join us there.

No one really knows that right now, as CADASIL is often misdiagnosed or NOT diagnosed. It is genetic, so a genetic blood test will tell you if you have this serious degenerative condition.

I attended the first-ever CADASIL conference in the USA in July in DeKalb, Illinois, put on by the ULF (United Leukodystrophy Foundation) and TWHH (CADASIL Together We Have Hope). Of the approx. 50 CADASIL patients who attended, about half raised their hands when asked if they had been misdiagnosed as having MS (Multiple Sclerosis) first.

When I was diagnosed in the fall of 2009, less than 500 people in the USA and 1000 in the world had also been diagnosed with CADASIL. That number is growing daily, as more people are made aware of this genetic disease and are tested.