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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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Hello, my sister was just diagnosed with the disease this week. My sister's family and I are submitting blood work for genetic testing. I have not gotten all the details yet. However she is being seen by physicians at the Mayo clinic in Rochester, Minnesota. I will let you know of any information that I receive regarding the study.
Thanks Dwayne! My prayers are with you and your family. I didn't pray before, funny how things work out. lee
Dwayne,
I have it too. Just so far ataxia of speech. What is your email address? Mine is stanandpaula@comcast.net
HELLO,
MY NAME IS PATSY AND MY HUSBAND WAS DIAGNOSED WITH FAHR'S ALSO. I CANNOT FIND ANY INFO OUT ABOUT THIS. I DO NOT USE THE COMPUTER MUCH BUT I AM VERY INTERSTED IN TALKING WITH YOU BUT WONDERED IF I WOULD BE ABLE TO TALK TO YOU OVER THE PHONE PLEASE RESPOND BACK TO LET ME KNOW IF THIS IS POSSIBLE.
THAK YOU,
PATSY IN COLORADO
SL_BROCK@MSN.COM
HI,
MY HUSBAND WAS DIAGNOSED WITH FAHRS AND I WOULD REALLY APPRECIATE IT IF YOU COULD FORWARD ANY INFO YOU GET FROM THE MAYO CLINIC FROM THE STUDY I WOULD APPRECIATE IT.
THAK YOU,
PATSY IN COLORADO
SL_BROCK@MSN.COM
Hello, my phone is 715-572-7292. I just visited my sister, she will know more about the study in a couple of weeks.
Did you guys know that there has been 30 documented families with Fahr's in the world ! I found that out from my geneticist. Yesterday I met with her, I donated my brain for science. And I am storing my DNA in the blood bank for future references. For my son if he decides to get tested. My geneticist is also contacting a doctor in L.A who wrote a book on Fahr's. can't remember his name, but hopefully I will be put into clinical studies. I will update everyone if I find out more. take care!!! Lee
After my mother passed of a very rare disease called Cortico Basil Gangliotic Degeneration, the family began doing research into what the cause was. My aunt searched the family geneology in regards to this disease and while searching for mom's disease, discovered that there are actually 2 different types of Fahrs/Farrs diseases'. Both, sadly, are genetically transferred.
The first is called Farr's disease and it is similiar to ALS, it's formal name is "Familial Amyotrophic Lateral Sclerosis". The other was called Progressive Muscular Atrophy. We were not able to find out if my mothers' disease was associated with either one of them so I hope this can be of some help to you and/or your physician to research which of the two you have and hopefully find a treatment to help you live with it.
Can yu forward it to me, too, please?
Yes, it may take a day or two but as soon as I get all the contact and/or site information I will post it here and send it to you and Macbeth.
Wishing you all the best,
Here is the information that we found,
Farr's disease or Fahr's disease--Farr is an anglicized version of the
name--is either Familial Amyotropic Lateral Sclerosis or Ideopathic
Basil Ganglia Calcification (IBGC); It is possible that FALS is an
earlier name for IBGC or that the faulty gene that produces FALS can
also produce IBGC. The Farr Family Genealogy Forum has some entries on
Farr's disease--they believe it is FALS
Also check out www.medhelp.org/forums/neuro. I am going to see if I can
connect FALS and IBGC.
We hope this will helps.
Auntie M
Given our family history, I can believe that a Farr gene could produce
any number of neurological disorders. Aunt Pat
Hello everyone,
My Mother who is 75 was diagnosed with fahrs in July, by her neurologists and she went down hill fast.She started not being able to walk then her motor skills like feeding herself were terrible. She would hold her mouth open long before she got her food to her mouth and then about a inch from her mouth her hand would freeze. She was in a assisted living and we had to move her to a nursing home because she was so weak, could not walk or feed her self anymore. After about 1 month of being at the nursing home she started walking, feeding herself and was almost her old self again. This lasted about 1 1/2 months and then she slowly is going back to the rigidity, not feeding herself well and having a hard time walking. She also has been very confused thinking she was other places and driving her and her roommate there. Has anyone else had thes type of symptoms? We are so saddened by this disease/ any help or words of encouragement would be greatly appreciated
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.
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.
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
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.
I received information from UCLA where research is being done on Fahr's Disease/Syndrome.
Oh that's GREAT!!!! Anything that we can learn is wonderful.. Thank you xoxoxox
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.
If anyone wants to add me to their facebook I'd love it.
lee macbeth (toronto,on) Canada!!
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