Fahrs Disease
 

What is this besides it has something to do with the mind, I have been newly diagnosed.

Charles

Hi Charles and welcome to NeuroTalk. :welcome_sign:

I had never heard of this condition so I googled it. This is one of the links............http://en.wikipedia.org/wiki/Fahr%27s_syndrome

Hello and Welcome!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

i'm sorry i don't know. i'd call your dr's office and make them explain this to you.

welcome to NT

fahrs
 

this awful thing has no treatment, except symptomatic. There are balance issues, gait issues,and Parkinsonian issues later to look forward to. I, too have Fahr's. Sorry 'bout your diagnosis.

Fahr's
 

Charles,
You have the unlucky distinction of having the 4th rarest disease in the world. There is nothing to be done, as there is no treatment. It is calcium deposits in your brain that cause movement disorders and Parkinson like symptoms. It can also cause dementia and worse. I have it, too. :(

Hi,

I had not heard of this either.

It's rare. I hope they're working on treatments, and maybe even stem cell research. Never give up.

It being so rare, I would imagine there are many who are unaware they have this.

Well, at least you found each other. You're not alone on NT. There's lots of caring folks here.

Take care...:grouphug:

Fahr's information
 

The National Organization for Rare Diseases has a good fact sheet about Fahr's Disease. Go to their website and search under Familial Idiopathic Basal Ganglia Calcification. My son has this disease and is being studied at NIH in the Rare and Undiagnosed Diseases program, so I'd encourage you to contact them, too.

How to contact NIH:

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

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

Fahr's disease - new member intro
 

I am so excited to have found this forum through Google Alerts this morning. My son (age 14, adopted from Eastern Europe) was diagnosed about a year ago with Fahr's Disease. He has no symptoms yet other than calcification in the globus pallidus--we found the calcification by accident when he had to have a CT scan for a migraine aura.

He is enrolled in a study in the Rare and Undiagnosed Diseases Program at NIH (and they're looking for more participants). Apparently the disease is genetic, and so far they've found that the calcification doesn't originate in the brain tissue itself but rather somehow leaks out through the capillaries into the brain tissue. As I posted elsewhere here, the National Organization for Rare Diseases also has a great fact sheet, listed under Familial Idiopathic Basal Ganglia Calcification.

I'm just extremely worried about his future and what this all means for our family. We also have to figure out how somehow to tell him when he gets older just what it is that he has.

Don't worry
 

Dear a mom,
You may not have to tell him for 50 years and then he will know himself.It is highly unlikely that he will have major symptoms until at least 40.In fact, I don't see how they can diagnose him this young. Paula (64) 510-526-4147

Fahr's being studied at NIH
 

Hi,

I hope it's OK to post this response (which I also posted on another thread) because it's a pretty exciting opportunity at NIH.

You can live anywhere and have your Fahr's 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

Fahr's
 

It is calcium in the brain,primarily in the basal ganglia. Unfortunately, there are no treatments, except for symptomatic. You just have to accept it.
:hug:

I sent in the materials,today
 

and my doc sent everything,too. You now contact From: Hipple, Cheryl (NIH/NHGRI) [E] <hipplec@mail.nih.gov>, not godfreyda.

Cheryl Hipple
 

You now email Cheryl Hipple at NIH

you now contact Cheryl Hipple
 

You now contact From: Hipple, Cheryl (NIH/NHGRI) [E] <hipplec@mail.nih.gov>,

You now contact Cheryl Hipple at NIH
 

for a-mom to see

Thanks and I did
 

and you can contact Cheryl Hipple You now contact From: Hipple, Cheryl (NIH/NHGRI) [E] <hipplec@mail.nih.gov>,

Fahr's
 

How old is your son? I have sent in my discs and my neuro sent in the records. I was diagnosed in 08 but I have had speech issues for many yrs before that. That's why I got an mri in the 1st place. MY speech therapist was convinced that I had had a stroke. So, actually the radiologist diagnosed it. When I went back to the same neuro and the MRI, then she was able to diagnose it. But she couldn't w/out the MRI! Very interesting.
Paula