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01-12-2012, 11:36 AM | #1 | ||
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Junior Member
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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.
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01-12-2012, 11:50 AM | #2 | |||
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Wisest Elder Ever
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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
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01-22-2012, 05:19 PM | #3 | ||
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Quote:
Paula ( I have Fahrs,too ) |
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04-09-2012, 08:09 PM | #4 | ||
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Junior Member
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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 |
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05-27-2012, 11:33 AM | #5 | ||
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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. |
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"Thanks for this!" says: | CinGen33 (11-16-2019) |
05-27-2012, 11:35 AM | #6 | ||
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Junior Member
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And, I wrote to freyra at NIH. We'll see what happens
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04-11-2018, 12:39 PM | #7 | ||
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02-16-2019, 07:58 PM | #8 | ||
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Newly Joined
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Pamoohlah-
There is an article that refers to 7 cases of treatment using biphosphonate alendronate. This might be worth mentioning to your neurologist . This medicine may be able to provide respite for current sufferers and potentially delay onset in others tested as high risk. **************. More trials are neded though. |
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10-05-2013, 09:34 AM | #9 | ||
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02-14-2018, 02:27 PM | #10 | ||
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I've been treated for physical problems ie, degenerated disc disease, spinal stenosis, osteoporosis; I have a spinal stimulator implant, and pain shots every 4 months, but have been diagnosed last year with Fahr's Disease! But I'm 74 years old,and am ambulent and I can still think! Stress can play a part, I've learned, but how can one control stress when thinking about this disease? I'm interested in the program you mentioned that has been reopened in studying Fahr's Disease...
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