Someone I love very much was recently diagnosed with Fahr's Syndrome. I know that there is no cure for this and it can only be treated on a symptomatic basis. He sometimes has seizures or days where he is in quite a bit of pain. I was wondering if there was anyone here who knew of anything that I could do to help: any alternative therapies, any advice on how to handle seizures or their effects, any ways to be supportive. Any words of advice would be appreciated. Thank you!

Here are some links to some organizations - some of which run clinical trials.
http://www.ninds.nih.gov/disorders/fahrs/fahrs.htm

Doc

Thank you. I'm just trying to find as much information as I can.

I can't believe I actually wrote/posted that.
That's what I get for posting with a level 8 migraine... xx xx

Doc

Hi Starlight, It's not a treatment, but at NIH, the Rare and Undiagnosed Program is studying Fahr's, and they just reopened the program to new participants. My son involved in the program and they're looking for more people.

Here is a link to that NIH program:

http://rarediseases.info.nih.gov/Res...aspx?PageID=31

and
http://rarediseases.info.nih.gov/GAR...ification.aspx

And can you live anywhere or do you have to go to their hospital?
Paula ( I have Fahrs,too )

Paula (and all),

Yes, you can live anywhere and be studied at NIH. E-mail Rena Godfrey at godfreyra at mail.nih.gov (replace "at" with @) -- she's a physician's assistant working in the Rare and Undiagnosed Diseases program.

They are currently studying a group of about 14 patients and looking for more. Through them, I learned that there was a recent Chinese study that identified a gene for Fahr's, but none of the patients in the NIH group have the gene, so they are saying it's polygenic (more than one gene can cause it) in nature. Symptoms vary considerably by individual, so the (rather scary) information on the Internet may or may not be applicable to you.

Please do contact them. The more people they have, the more they (and we) will learn. Treatment is free.

A-mom

Dear Liz,
I think that's your name. I don't want to loose the page and start looking.
I was diagnosed in08. I was seeing a speech therapist on my own, and she said that I had had a stroke. So, I knew that I hadn't but I got my gp to give me a script, and were we both surprised. It mentioned Fahr's as a possibility and I got my diagnosis.Then I went back to the same neurologist that could not diagnose me by just my speech, and with the MRI she was able to diagnose Fahr's. That was in 08. Nobody else in the family had it (my parents are both deceased) but my paternal grandfather had undiagnosed Parkinson's. He died at 79, upright but w/dementia. I sure hope that I don't get the mental part of Fahr's. As of now I have no mental symptoms, only balance issues and walking uphill. Going down i'm fine but I am slow going up. I am64. What symptoms does your daughter have. You can reach me directly at stanandpaulaatcomcast.net. Just substitute the written "at" for the @ sign.

And, I wrote to freyra at NIH. We'll see what happens