Hi Carla-
I just joined myself. I went thru the predective genetic testing in 2005 when we discovered my dad had it after 12 years of not knowing why he was sick. I was 28 when I got tested and had already had 2 children. In many ways, knowing the information at such a young age has enhanced my life and my faith. I know that sounds weird, but I do consider it a blessing to test yourself at such a young age to be sure that you are truly LIVING your priorities and not just saying it. I made big life changes and have been doing well, with the exception of last year. I had been diagnosed with MS in October, in addition to CADASIL. I had two attacks within 8 months, the recent one very severe and was hospitalized. I've thankfully almost fully recovered but continue to struggle with fatigue and some occassional vision disturbances and tingling. I also have Endometriosis and CADASIL severely impacts this because I can't take anything related to hormone therapy because this could increase my risk of stroke. Therefore, after many years of monthly pain (took Percocet all day today! UGH!) I've decided to have a hysterectomy soon.
Although we may feel that there is nothing in regards to treatments for CADASIL, it's also very important to know what NOT to do: birth control, smoking, no over-the-counter cold medicines that contain phenylalanine or anything else that is vasoconstricting. My dad had his 1st stroke at 44 yrs old after having a bad head cold and taking Sudafed. I will never touch the stuff!
Let me know if there is anything I can do to help. And stay positive!
Sarah