Quote:
Originally Posted by a-mom
My son has it, too. He is enrolled in a study in the Rare and Undiagnosed Diseases program at NIH, and they're looking for more participants, so anyone with Fahr's should really contact them to benefit all of us. I also found a lot of information at the website of the National Organization for Rare Diseases -- look under "Familial Idiopathic Basal Ganglia Calcification."
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Hello,
My 25 year old son was recently found to have calcifications in the Basal Ganglia - he is due a 2nd MRI in May. I am desperately researching EVERY thing I can find out about it. My son has started showing symptoms (fainting, mood swings, verbal aggression, some involuntary movement but NO seizures) I am flying to Cuba after the MRI - as I found a Neuro Clinic there (and they have cures for things the rest of the world can only dream of -hopeful - but a realist)
If you don't mind my asking how did your son get in the study, is there an enrollment website or someone I can contact. I am not wealthy but will sell everything I own for my only child's treatments and well-being . I beg those that know ANYTHING to share their findings (whatever I find I will share will all that care for it)
I thank all of you in advance,