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I have been recently diagnosed with Fahr's (2 weeks) ago. I'm from Canada. Not too much is known about it. I'm really upset about the whole thing. If I could talk to anyone with the disease and see if there's research going on, I'd definitely like to be involved. Thanks L. Macbeth
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Surgery ALS Propranolol Rare diseases Primidone Kidney stones Ataxia
I had one more weird thought for Fahr's that I don't know if is helpful. Kidney stones are routinely treated with shockwaves to break them into little pieces that can be more easily removed. The problem is the fragments might be sharp and hurt other areas of the brain. So under life threatening conditions this avenue may help the neurosurgeon remove difficult to access calcifications or make the removal easier via vacuum.
Just something to think about and discuss,
Aleck
Btw I was told that doing Brain Surgery Is WAY to Dangerous to remove calcium deposits and They most likely will come back , The problem is not so much the calcium that's all ready on your brain unless super life threatening its where its coming from and how can it be stopped from building up once they figure that out maybe Alecks Idea of Calcium disintegration would be helpful ..
Aleck ,
Sounds like a great Idea, buT..... once all the calcium is gone who says its not gonna come back and where its coming from is unknown so injecting my brain daily for something thats just gonna come back means injecting everyday forever no Thanks!
Has anyone started any type of treatment for the symptoms? My neurologist has me on some Parkinsons meds for movement problems. etc. I am currently on Sinemet, Primidone and Propranolol. It seems to work for the tremors and most movement problems, as well as my speech.
Hi Lee,
I am a chemist who studies rare diseases. Since there is no treatment of any form. I want to think out loud with you and the others to see what you think.
Fahr's is disease where calcium builds up on the basal ganglia. There is a therapy that has been done for kidney stones that if were in your shoes I would consider. EDTA is a molecule that is FDA approved for heavy metal poisoning. It is specially designed for removal of calcium. Now some other doctors have used EDTA in a way to soften and dissolve the hard calcium build up in kidney stones. Kidney stones are made of calcium oxylate or calcium phosphate.
My proposal to you is to have a neurosurgeon put a subdermal port into your head that can deliver the EDTA directly to the calcified areas. The EDTA will carry away the calcium build up.
Each day you will have to inject the EDTA into the port so that it can slowly eat away at the calcium build up. Theoretically, this should fix the underlying symptom of calcification.
There is no protocol for this as far as concentration or pH so I would start with a low concentration and work my way up.
I hope these ideas are helpful to you and if any of you have any questions or thoughts please email at aleck.dwyer@thomson.com
Thanks,
Aleck
I have family tree information on Samuel Farr. The "Farr's" disease in this family is a familial form of ALS. The "Fahr's" disease mainly discussed on this thread is also familial, but has to do with abnormal calcium levels. Both diseases are genetic, but they are different. Which Farr/Fahr are you interested in?
Hi.. do you still have the family tree information on Samuel Farr? I am very interested in this. My sister was diagnosed recently. Her husband says with Farr's, my mother says Fahr's. I would like to learn as much about both in the meantime. Any information you have would be great! We just know so little about it. Everyone is puzzled.
Anyone wanting to chat please contact me on facebook. I rarely come to this site. lee macbeth (Toronto, Ontario) I'd love to chat and swap stories.!!! xoxoxoxo
My family has the Farr illness. I am interested in the research you have from Mass General. My grandmother conducted a lot of geneology for this study. She is gone and I now have been diagnosed-today. I am searching for any information I can get. I also have a facebook which I use more often than this site. I just signed up to follow this conversation.
Hello
My name is Jessica I am 20 yrs old and I was diagnosed with fahrs when I was 12 I am currently undergoing studies at loma linda hospital nerology and I have done several studies at ucla California my mom and my two sisters have fahrs as well each with very different Symtoms I was told That depending on where and how large a calcium deposit sits on your Brain depend what symptoms and how bad that symptom can be. please feel free to email me of find me on facebook or myspace mrspepiot@aol.com
HI... i have fahr disease too... have been recently diagnosed (one week ago)... and i do not know what i can do about.... is too complicated for me because i change what i was... and i lose my boy friend because of this disease!
i apreciate if some one talk about her/him life and experience, what is the feelings, what the changing, if he/she feel worst whith medication or better, what you do to circumvent de sintoms...
i'll be whating for an answer...
thank you..have a nice day :)
If anyone wants to add me to their facebook I'd love it.
lee macbeth (toronto,on) Canada!!
You don't have to cry alone, ya know! Now is the time to lean on family. They know you are strong, you don't have to prove it. But you are also human - and we can sometimes help each other. I wish I knew more about your "Fahr's disease" so that I could tell you more.
Oh that's GREAT!!!! Anything that we can learn is wonderful.. Thank you xoxoxox
I received information from UCLA where research is being done on Fahr's Disease/Syndrome.
sslater, I am interested in the genetic connection. Unfortunately I was adopted at the age of 3 months. And no family history was given or my given name But here's what i do know. I was born in Toronto , Ontario, Canada on July 12, 1970. That's all she wrote.
Thank you everyone for your responses. I have to be strong for my family. I don't want them to know how upset I am. So I cry alone. xo
Just as a PS - There is indeed a difference between "Fahr's" disease and "Farr's" Disease - although both pronounced the same. There is no known genetic connection between the two.
I researched the Farr Family disease (FALS) and worked with Massachusett's General for a little while to help determine my father-in-law's cause of death. I have some contact information for those interested in learning more about FALS. The "Farr" version is a mutation on the SOD1 gene. Specifically, it is an A4V mutation. There is a test to determine if this is the cause of the ALS symptoms - which may be useful in the event someone is trying to determine if the ALS is genetic or sporadic.
I have the family chart as well for a lot of the descendents through the Farr Family. The first documented case of Farr's disease is in the early 1800
s. We have traced this down the family branches from Samuel Farr. I can probably assist some of you if you wanted to know when/where a possible family connection occurred.
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