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April 16, 2008

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Gail Rae Hudson

I'm impressed that you've included awareness of this topic on your website, Mona, because, young or old, despite the reason for and trajectory of the dementia, those with dementia and their families have many common experiences. When I read Mary Ann's comments in the second to the last paragraph, I just nodded my head in agreement. I know the feelings she's expressing. Everyone who cares for/about someone with dementia knows these feelings. Reading someone express them so meticulously and eloquently helps, in an odd sort of way. Thank you for this post.

Michelle Oakley

My dad, age 44, is currently undergoing numerous tests and procedures. His physician most recently stated that he is sure my dad has this syndrome and has ordered genetics testing to rule this out. The doctor also says that if he is positive, there is a 50% chance that my brother and I will have inherited the gene. The information on this website has been very helpful in both education and support. It is nice to know that someone else understands. Thanks so much for this site. And I do appologize for your loss.

toi conquest

at age 25 i had onset of cadasil six mounths ago i was told my 15 year old daughter had cadasil and already she was having TIAS. so i think the age of onset seems to be getting younger.i am sorry for your loss i have watched cadasil take my father and uncles but i will not just sit back and let it take my only child.thank you for this site

Lisa Negron

My son was diagnosed with CADASIL at the age of 12. We made the decision to test him for it upon 4 other family members testing positive. His father, paternal grandmother and two paternal aunts were diagnosed all within five months of each other. My son is now 14 years old and suffers from extreme, mood swings and fatique. I definately agree that the onset seems to be younger however I am being told by his pediatrician not to worry because it is too early for the onset. My son's father now lives in an assisted living facility. I too am very sorry for your loss. I have watched the effects of CADASIL and what it can do to a family.I've experienced and watched what it has and continues to do to his and other family members. Wish I could talk with someone who understands. God Bless!

Kelly and Jeff Jones

My 10 year-old daughter was diagnosed with Cadasil last week. She just had surgery in Jan to improve the blood flow to her brain, as she also has been diagnosed with Moyamoya. Hearing that she also has Cadasil was a complete shock, her recovery process is going so well (she's having fewer migraines after surgery). As parents we aren't exactly sure as to what to expect. As far as we know, there is no one in the family who has similar symptoms. Our daughter does not appear to be having any symptoms. Hopefully this site will help us research more on the topic. Thanks and God Bless.

Kathy

Hello the Dr wants my husband to have this cadasil blood work done but explains it is up to us since it is so "expensive" but he won't mention any cost to us. Can anybody give me an idea as to the cost. Exact figure not needed but an "about" figure. Some nurses are calling to make an appointment to draw blood and they won't give a $figure either. What the heck is going on. Any cost ideas????
Thank you..Kathy at [email protected]

Mona Johnson

Kathy, I suggest you contact CADASIL Together We Have Hope for more information: [email protected]
or 1-877-519-HOPE or 512-255-0209. Good luck!

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