Patient Voice Questions
This page lets you see the areas covered by the Patient Voice questionnaire before you register or start your story. You can take your time to think about the questions and decide what you would like to share.
1. Your diagnosis journey
- What were your first symptoms or signs?
- When did you first realise that something was not right?
- Did you experience delays or difficulties getting a diagnosis?
- Were you given another diagnosis before receiving the correct diagnosis?
- How did receiving the correct diagnosis affect you and your family?
2. Living with your condition
- How does your condition affect you day to day?
- How do symptoms such as fatigue or mobility difficulties affect your life?
- What has your experience of treatment been like?
- How does your condition affect breathing, eating or other aspects of your health and daily routine?
- How has it affected education, employment, relationships, family life or social activities?
3. Support and services
- What support have you received?
- What support has made the biggest difference to you?
- Have there been gaps or difficulties in the support available to you?
- What adaptations or practical help have made everyday life easier?
4. Your experiences, achievements and lessons
- What are you proud of achieving?
- What have you learned from living with your condition?
- Is there anything you wish healthcare professionals had understood better?
- What advice would you give to someone who has recently been diagnosed?
5. Looking ahead
- What are your hopes for the future?
- What would you like to see improve for people living with Pompe Disease and other muscular dystrophies?
- Is there anything else about your experience that you would like people to understand?
Ready to tell your story?
When you are ready, you can register and begin your Patient Voice story. You can save your progress and return later.
Already started? Log in and continue your story.
Pompe Disease 