Leber Hereditary Optic Neuropathy (LHON / LHON Plus) is known as a Rare Disease. Researchers estimate that LHON affects around 1 in 35,000 people. Most doctors will never see a case of LHON or LHON Plus, but there are several “centres of excellence” where doctors see many cases and do research into LHON.
Cases of LHON have been documented in many countries around the world.
The Internet, especially Social Media like Facebook, lets people form groups across the whole planet.
When people get together and share their experiences, we hear so many people go through the same kind of experiences. Often people see doctors who have no knowledge of LHON, or out-of-date knowledge. Some people, especially women and young children, struggle to get an accurate diagnosis because of this out-of-date medical knowledge.
A lot of social help, emotional support and assistive technology or aids is there because it is useful for more than just people affected by LHON. There is still nothing to beat the power of a self-help group for support and information. These are people who know exactly what LHON is about and how it affects a family.
for a lot of things, a LHON self-help group is the best place to ask, as those people know from direct experience and can empathise, not just sympathise.
Here are some links to LHON Communities:
This is a large and active Facebook Group which has been running for several years. There are many members who are happy to provide information or advice.
This is a patient-oriented LHON site run by Lissa Poincenot in the USA. As well as providing a lot of information about LHON, Lissa maintains a register of people and families affected by LHON, and can often put people in touch with other affected families in their locality.
Lissa Poincenot is the LHON Ambassador for the United Mitochondrial Disease Foundation (UMDF).
On the first Wednesday of every month, at 8 pm Eastern / 5 pm Pacific, there is LHON LIVE! a conference call for discussing any LHON related matters. There is a USA Toll-free number, and recordings of calls are available on the UMDF LHON page.
LHON to LHON is a Facebook group restricted to people who have lost eyesight due to LHON. This lets members express their feelings and discuss matters knowing that only people who have shared their experiences can read their posts.
On-line database about people affected by LHON with useful links and information.
A closed Facebook group for people affected by “LHON Plus”. This is LHON combined with other severe symptoms such as Dystonia.
Asociación española atrofia nervio óptico de Leber (lhon) (nohl) – LHON Self-help association based in Spain. They also have an ASANOL Twitter Page
Spanish LHON (ANOL) Association Facebook group.
German Facebook group for L.H.O.N (Lebersche Hereditäre Optikus Neuropathie),
Facebook Community Page.
This is a closed Facebook group restricted to women who have lost eyesight due to LHON.
Facebook group for families in Australia and New Zealand affected by LHON.
Closed Facebook group for all those directly or indirecty affected by LHON in California
Facebook group for affected families in Canada.
Facebook group for the LHON community in Danmark.
Facebook group for LHON community in Germany, Austria and Switzerland.
Danish LHON site.
This is a Facebook Page, not a Group. It gives information on a LHON support group in The Netherlands.
This is a closed Facebook group restricted to people in Florida who are affected by LHON.
A Facebook Community page rather than a group.
This is a closed Facebook group restricted to people in Scotland who have lost eyesight due to LHON.
This is a closed Facebook group set up for the LHON Society, an English charity recently created to help support families affected by LHON in the UK.
Facebook Group for the LHON Community in Sweden.
Facebook group for LHON community in The Netherlands.
An Italian patient page for LHON on MITOCON – a charity for Mitochondrial Disorders.
Facebook group for the LHON community in Argentina.
Small Facebook group for LHON affected families in Portugal.
Italian Facebook group for LHON community.
Facebook for people in the New England area of the USA directly or indirectly affected by LHON.
A French website dealing with LHON and research into Mitochondrial disorders.
A French Facebook group for families affected by Neuropathie optique de Leber.
LHON Patient group page from The Netherlands.
Public Facebook group.
Facebook Community page in support of the Bascom-Palmer Eye Institute.
This page was last updated September 4 2015