Neurodegeneration with Brain Iron Accumulation (NBIA) Community

Meet, discuss & support other patients or families living with Neurodegeneration with Brain Iron Accumulation (NBIA). Contribute to topics, or just share what's on your mind


Good day everyone.
I was diagnosed with neuroferritinopathy in jan/feb of 2016. I would like to know if there are any other members with this substrain of nbia.

Hello Thomas. I searched on the internet and came to this website for find out more about this condition. The doctors here don't seem to know much about this condition because they are not giving me answers to my questions. I would like to know from you more about this condition because you posted over a year ago and I was only diagnosed 2 weeks ago. I am in severe pain on my entire right hand side of my body. Is there any treatment that you are on. How long does it take for the condition to reach extremity. I am a working person and like to prepare myself for the worst. Kind Regards Nisha