Kansas, USA

Age 44 at diagnosis

Editor’s Note: Tami was confirmed for having the CADASIL mutation in early September 2017, and shared her story a short time later. Thank you, Tami, for your willingness to talk about this so soon. (This piece is edited from her posts in CADASIL Support Group on Facebook.)

Tami’s Story:

Although I expected to hear that I had CADASIL, actually being diagnosed was still tough to swallow. Once I thought about it, though, I realized that nothing has really changed. Yes, I have it. Does that make me any different than I was before the diagnosis? Absolutely not. Since it’s a condition we are born with, why should me knowing change who I am? The only difference is that now I know, so I have the opportunity to make healthier decisions and try my best to avoid stress and things that can expedite symptoms.

I’ve been healthy my whole life, but after a recent TIA, I realized something was wrong. By continuing to eat healthy, exercise, and try to minimize stress, why can’t I still be as healthy as possible? I realize each person is different and has various symptoms, but I believe a positive attitude plays a huge part in being healthy. I believe there is hope. We can’t change the fact that we have this disease, but by realizing we’ve always had it–it didn’t just show up out of the blue—we can at least try our best to get through it.

I find comfort in knowing that I’ve been ok for this long, and that it was bound to rear its ugly head eventually. Ignorance can be bliss, but knowledge really is power. We can’t control the disease, but why give in and let it control us?

I’m sure some people reading this are thinking to themselves, “Just wait… You may not feel this way next month, next year, etc.” I certainly don’t expect things to be easy, but why complicate it more by focusing on the negatives? Make the most of the positives in life and take control of what you can. Accepting I have this disease isn’t the same as embracing it. Life isn’t easy, but I firmly live by the belief that there are enough stresses that we can’t control, so the best thing we can do is eliminate the stresses we can.

Every day is a blessing. Nothing is promised.