Share a story

As LHON is a rare disease, hearing stories from others who have been affected can help people feel less alone. It can also help people learn more about the condition and how it can affect lives.

If you are affected by LHON, we would love to hear from you. If you want to share your story with us, please complete the form below. When you email, please include your name and let us know if you are happy for your story to be shared on our website.

You don't need to be affected with vision loss to share your story with us — we want to hear from anyone touched by LHON, whether you are personally affected, a carrier, a parent, or a friend.

Personal Details
Which of the following best describes you?
Your story

Your story

The following questions provide an optional structure for your story, but please feel free to tell your story how you like.

If youd like to share your story in a different format, you can use the upload button below to upload a file of your choice it could be a video, an audio file, or a word file, for example. If youd prefer to complete the below story in your own time, download this editable pdf template to upload or email later. And if youd rather speak to one of the team to get their help to write your story, please email

(please upload .txt, .doc or .pdf)

Writing notes:

  • If you are living with LHON, you could share where you were in your life when you first started to develop LHON, how you reacted to the first signs and how and when you were diagnosed (month, year) and what the impact was.
  • If you are a carrier, you could share when you first learnt that you carry a LHON mutation (month, year) and how it affected you.
  • If you are a family member, carer or friend of someone with LHON, feel free to share your experience and the impact LHON has had on you or anything else you wish to share.

If you’d like us to post a photo of you with your story, please upload one below. Please upload an image file less than 3MB. Aim for a portrait layout.

Please confirm that you consent for your story to be posted on our website and/or promoted via our social media channels: