Your Experience Matters: Share Your Diagnosis Story

We’re inviting members to share their path to diagnosis - particularly if you experienced a long, difficult, or uncertain path to getting answers.

We know that many of our members have had challenging journeys to reach a diagnosis, and sharing those experiences can make a real difference in improving understanding among our members and healthcare professionals.

As part of our GP awareness campaign, we would love to capture real lived experiences to support this work. These stories will be used:

• Within the campaign to strengthen our messaging

• In a newly developed clinicians’ area on our website, where healthcare professionals can read real member experiences and better understand the impact of delayed or complex diagnoses

If you’re willing to take part, you can choose how you’d like to share:

• A written account

• A voice recording

• A short video

• A photo alongside your story (if you feel comfortable - photos really strengthen the impact)

You can submit directly through our simple form here: My Diagnosis

You can share as much or as little as you feel comfortable with.  

Thank you to anyone who feels able to contribute. Your experience can help improve awareness and care for others. 

If you have any questions about sharing your story, please feel free to contact Gillian at respite@mdi.ie

We also recognise that reflecting on your diagnosis experience can sometimes bring up difficult emotions. Please remember that Muscular Dystrophy Ireland offers counselling and alternative therapies free of charge to all members if you feel you would benefit from additional support.