Everyone responds differently to a sight loss diagnosis. Whether it affects you or a loved one, dealing with an LHON diagnosis can be challenging. It is important to remember that you are not alone and there are always people you can talk to. As well as family and friends, there are many charities, organisations, and people in the LHON community who are willing to share their experiences and offer advice and support.
Most people feel a whole host of emotions after diagnosis, but it’s important to remember that your emotions are natural and personal to you. Everyone will react differently, but it is not uncommon to feel grief for a past life that appears to have been lost or to feel a sense of isolation. Loss of confidence is common, with tasks that were once routine suddenly feeling impossible. But remember, with the right support, advice and patience, people with sight loss can regain their independence.
If you become overwhelmed by your emotions and feel you are unable to cope, it’s important that seek help. Some people find professional counselling helps, whilst others prefer to talk to someone already affected by LHON who can relate to their situation and offer practical and emotional support.
- The RNIB provide confidential telephone support, information and counselling to those who, due to sight loss, are experiencing emotional difficulties
- The Macular Society offers telephone counselling to people with loss of central vision
- Your GP will be able to signpost you to NHS services that offer psychological support. For a full list of registered counsellors and psychologists, visit:
- The Counselling Directory website also contains useful information on counselling in the UK
- The Samaritans is a round-the-clock support service and can be called at any time from any phone for free
Patient support groups
- Contact the LHON Society if you want to speak to someone who lives with LHON or fill in this form to find or become a buddy
- The RNIB Sightline Directory can help you find charities and support groups near you
- RNIB Connect Radio is a radio station for blind and partially sighted people. It broadcasts all day every day online or via the television on Freeview channel 730