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

MPAN

Hello,
My name is Alema. My daughter (20) has MPAN - Mitochondrial-membrane Protein-Associated Neurodegeneration and probably is the only one in our country.
First symptoms appeared when she was 11. Diagnosed at 16.
Gait problem is the biggest issue.
We have recommendation for feet operation and DBS so we are in the process of arranging it. Recently switched from Baclofen to Tizanidine.

Hi Alema,
You can contact me on the email:
Nbiasuisse@gmail.com
We are a patient association based in Switzerland and actually supporting the research on MPAN.