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.