Leber hereditary optic neuropathy (LHON) Community

Meet, discuss & support other patients or families living with Leber hereditary optic neuropathy (LHON). Contribute to topics, or just share what's on your mind


LHON blogs

I just found a good about LHON by a woman named Maria. Maria was affected by LHON a couple of years ago, and has quickly become a very visible and important part of the global LHON effort.

Her blog is here: http://www.girlgoneblind.com/

What other LHON blogs do you follow?

A great blog written with humour and warmth and pulling no punches. I met Maria at the US LHON Patient day in Washington last year and she has quickly become a linchpin of the US community and supporter of fundraising for LHON research. The blog outlines some of this work as well as the frustrations but also fun of daily life with vision impairment. LHON is not a club anyone chooses to join, but once you are enrolled you might as well enjoy it as best you can!


http://blindgirlscanrockheels.com by Jessica Loomer is also great fun!

http://visionfora.blogspot.com by Penny Duffy chronicles one mom's journey through LHON with her young daughter.