Originally Posted by michael178

It is estimated that only 400 families worldwide are affected by cadasil, there are a couple of people here that have it, myself included, and I would welcome contacting someone else. Do you know where they are getting tested, which lab is doing the testing? And who are they currently seeing? Thanks. As for new information, I do not know of any...other than it is a genetic problem causing microscopically small blood vessels to fail deep inside the brain, the resulting mine stroke cause extensive damages i.e. a lot of white matter damages. My brother and sister went to the Mayo Clinic and they were not much help. I lived in OR and WA and never saw anyone who had treated cadasil patients. But, of course, there is no treatment anyway...which sounds a lot worse than it is.

To me, the no treatment relieves me of a lot of false hopes, and gives me a lot fewer things to worry about. I just try to remain as healthy as I can. I exercise which helps me the most, and take stuff for the dementia cadasil causes. I have a neurologist who helps with my neuro symptoms, but I rely mostly on my long time personal physician, who is a good internal medicine physician.

In short I treat the symptoms, and forget about cures. Cadasil is an orphan disease...too few people have it, so there is no or little research on it, especially in the US; the UK, I think, is doing the most work on it, especially in Scotland, but there is probably a lot happening in India and other foreign places too.

I do not mean to sound pessimistic, but I am almost at my tenth anniversary with cadasil, and reality has a way of slowly making one a realist.

Good luck, and I mean that in the best possible way.

I am not a fan of foundations, but there is one, in Texas, for cadasil called "Together We Have Hope," a sentimental expression in the face of daunting and fatal odds, but they are certainly well intended. The foundation is mainly, at least in my experience, for partners and support networks for those who actually have the disease. And, of course, they raise $$$$, like most foundations for a variety of Cadasil causes.

Originally Posted by nrobey

So what you're saying is both exercise and asprine are bad (contradicting) for cadasil patients? I'm not sure I have it, but am currently fighting with my insurance company in order to be tested for it. I've had multiple strokes in my eyes (not my brain). Lost a lot of vision that I will never get back. I've also had 2 seizures. Have headaches, but not like a typical headache. Numbness in one leg (just the upper portion). And white matter in my brain according to my past MRIs. This all started at age 24 for me. I'm now 44. Have seen a neuroopthamologist at Johns Hopkins and he's the one that wants me tested.

Can I ask where anyone else was tested? And if, by chance, you know the CPT number that was used in order to be tested? That's part of my problem - none of the doctors' offices can help me come up with that number and therefore I cannot get a referral. It's quite frustrating not knowing what's going on, what my problem is (could be cadasil, but even if it's not, I will most likely have more strokes throughout the rest of my life and therefore dimensia to follow).