As the condition is so rare, it can seem like you are the only one living with LHON. One of our reasons for existing is to offer practical and emotional support to people living with the condition. We believe the best people to provide that is those who have got the t-shirt! This also applies to those who are close to the person directly affected.
Read about people who have been through similar situations and experiences. It can be inspiring to read about the achievements and exploits of others with the condition and know you are not alone.
There are three Facebook groups for LHON. The LHON Society group is for anyone impacted by LHON and is aimed primarily at a UK audience. This group is also for anyone impacted by LHON but has an international audience. Finally, the LHON to LHON group is ONLY open to those who have sight loss.
Follow us on Twitter for up-dates on what the LHON Society is getting up to and how you can get involved.
The Macular Society has local support groups that are for people with central vision loss within working age.
If you are looking for some inspiring and informative bedtime reading we suggest the following titles:
Born With A Bomb by Valerie Byrne Rudisill
A collection of 12 short stories written by people who have lost their eyesight due to LHON. You will find humour, despair, courage and inspiration in these stories. The book is available in standard print and as an e-book from Amazon.
Living with more vision and less sight by Steph Cutler
Steph is one of our trustees and has written an e-book celebrating ten years of living with LHON. Living with more vision and Less sight is highly recommended and available in a number of formats from http://making-lemonade.co.uk/ebook/