CADASIL Support Group

Hi putermom, I have just found this website, so I hope that you are still using it. I think organising a support group is a great idea. It needs to be done.

Hi Rossfamily. I know how frustrating things can get from both sides. Person having cadasil and love ones having it. I have found another place that I have found very helpful. This is the web site

http://home.earthlink.net/~cadasil/Forum.htm

Its been a big help for me because I too have alot of questions and its helped me find some answers to them. There are alot of people there that send e mails and get answers or find someone that also is having the same problem.

Thanks putermom, I cant believe how little around there is. I am frustrated that I have no idea what is installed for us, which is also very scary. Some days you just want to block it out and see that its not real but other days you just really worry about it. Thanks again for the site, I will be popping in to check it out.

Your welcome Rossfamily. I have been doing as much searching as posible. Anything I find I will share.

Hello, new to the site, Cadasil for me too...
Yes, scary at first, I just get the migraines so far. I'm always looking for new info. I spoke to the man who's wife started the CADASIL foundation site, he takes L-Arginine (a natural product)...I'm going to try it...

The link I gave before doesn't work when you just click on it so make sure you copy and paste the whole thing. I reposted it here also.

http://home.earthlink.net/~cadasil/Forum.htm

hi i want to let yu know you are in our prayers and there is always strength in numbers

Hi I am new to this website. Alot of members of my family have been diagnoised with CADASIL and I now am waiting for an appointment to see a neurologist to determine if I have it. I am a single mother of 3 school aged childrena dn I have looked on the internet for symptoms but they are very vague! Can anyone help me? I just want to know what to look for and if my symptoms are related to CADASIL or just maybe something else.....

Your doctor has given you some very good advise but unfortunatly there are not many Cadasil groups to find. As time goes by hopefully more people will find this site to offer the support that we all need. Just keep coming here and asking questions.

Hi putermom and others. Thanks for putting up the URL (Reply #6) for the Together We Have Hope website. I tend to think we should all stick to the support email there, since there are so few of us. But any communication is good! My husband aged 60 has CADASIL. I'm looking for others in the San Francisco Bay Area to try to meet in person. I'll track the replies to the discussion putermom has started to see whether anyone responds. My heart goes out to all you folks with CADASIL and those who are the caregivers.