Leber hereditary optic neuropathy (LHON) Community

Learn how others live with Leber hereditary optic neuropathy (LHON) and share your story

LHON 2016 Conference

by LHON.org published 6 months ago


The fourth annual LHON Conference took place on June 17, 2016 near Seattle, Washington
 

Conference Agenda: http://www.lhon.org/lhon/Agenda.html

 

My life with LHON

by RareConnect team published 7 months ago

I was wondering how to best explain what does living with LHON really means. I thought that maybe I could go back to when I was a 15-year-old high school student and how I got used to live with my blindness. I was wondering that maybe it could be interesting to explain the way we DO NOT see, to talk about the blurry spot, like a TV with bad signal. Then I asked myself if it was really worthy to...

Leber Hereditary Optic Neuropathy (LHON)

by russellgww published 7 months ago

The challenges of a dramatically under-diagnosed rare disease In June 2011, Russell Wheeler’s twenty-four year old son, Richard, began to experience blurring of his vision. An examination revealed a swollen optic nerve thought to be caused by a viral infection. Over the following weeks Richard’s eyesight deteriorated and, after a series of further tests, the possibility of Leber Hereditary Opti...

Vivere con la LHON? Ecco cosa significa. Fabrizio Sottile e Giovanni Ansaldi

by Osservatorio Malattie Rare published about 1 year ago


Cosa significa essere colpiti dall'atrofia ottica ereditaria di Leber? Cosa vuol dire convivere con la LHON? A spiegarcelo il campione paralimpico Fabrizio Sottile e il Dott. Giovanni Ansaldi, entrambi affetti da questa rara patologia che comporta la perdita bilaterale, quasi totale, della vista.
Intervista realizzata il 17 marzo 2016. in occasione del corso 'Informazione e Salute....

Independent life despite LHON

by Fixers UK published about 1 year ago


Winchester Fixer Richard Wheeler, 26,* says he's often accused of lying about being blind because he's still independent. This film is part of his campaign to show that visual impairment is not always black and white. 

¿QUÉ ES EL LHON? LA HISTORIA DE JUAN

by Rareconnect team published about 1 year ago


JUAN TIENE 8 AÑOS, ES UN NIÑO NORMAL QUE QUIERE SABER MÁS ACERCA DEL "LEBER" UNA ENFERMEDAD ALGO DESCONOCIDA QUE LE HA HECHO IR PERDIENDO VISIÓN POCO A POCO.

Life returns - a movie about having LHON

by Krister Inde published about 1 year ago


Life returns is a film with Felicia and Hampus who describes their experience with having Leber's hereditary optic neuropathy (LHON).

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