Share a story - LHON Society

Personal Details

Full Name:

Date of birth (DD/MM/YEAR):

Location:

Which of the following best describes you?

a. Living with LHON

b. A carrier of an LHON mutation

c. A family member, carer or friend of someone affected by LHON

d. Another perspective (please specify below)

If you answered D above (please specify):

How would you describe yourself in three words?

In a few words, what are your key passions in life?

Email Address:

Phone Number:

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 info@lhonsociety.org.

Upload your story

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

Could you tell us a bit about your life right now — do you work/study/volunteer; are in a relationship/have family; have key things you do for fun etc?

How have you been affected by LHON?

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.

In brief, how would you describe LHON to others?

How have you learnt to adjust to LHON/a LHON mutation, or helped someone live with LHON /a LHON mutation? What support have you received and/or given and what has made the greatest difference to you and/or them?

What advice would you give someone who’s in a similar situation to you, whether recently diagnosed with LHON, experiencing early symptoms, a carrier or wanting to support someone affected?

Any final comments or reflections?

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.

Upload Photo

Consent

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

Yes, I am happy for my story to be shared