Sharing your experiences

Film your sarcoidosis experiences

The video clips that you and others record will enable us to share your experiences with others on this website. Perhaps you could talk about:

  • How the condition affects your life both from a personal and practical perspective.
  • How you felt about your diagnosis.
  • How you are reacting to treatment and the management of your condition.
  • Any tips that you have learned about living with sarcoidosis that could be passed on to other patients and medical professionals.

Nothing is stronger than hearing real patients talk about their personal experiences with their condition – good and bad.

Using the FLIXIE app

How to film your story using the FLIXIE app

The FLIXIE app is free - and if you send the clips while connected to your wifi there will be no costs.

You can send us your input on an Apple or Android digital device.

1. Visit the App Store or Google Play Store and install the flixie App.

2. Start the app, tap the scan button and hold the phone over the QR code below to join the project.

3. Follow the instructions on the Flixie app.

Tips on filming

Some tips on filming on your phone

When filming on your phone:

  • Film in landscape format – with the phone on its side rather than upright.
  • Please keep your videos short.If you have a number of points to make on the same topic please submit separate clips – ideally no more than around 1 minute in duration for each clip.
  • Begin each response by repeating the question e.g., “What helped me most when I was first diagnosed . . .?”

  • Keep the shots steady and try to avoid any shaking or jerky movement. You can prop the phone against something or even ask someone else to hold the phone for recording.
  • Ideally frame the shots so we only see your head and shoulders. Avoid being too close or too far away.
  • Do not film yourself against a bright light like a window as you may become silhouetted and we won’t clearly see your face. Make sure you are standing or sitting in a well-lit area.
  • Ideally find somewhere where you feel comfortable and relaxed.
  • Make sure you are also near enough to the phone to get acceptable sound. It will be a good idea to test it out with some trial filming – can you be clearly seen and heard? If you film outside be aware of wind noise. If you film inside make sure the room is quiet and not too echoey.
  • Do not try to script your responses. We are looking for natural responses to the questions rather than statements.
  • You may want to demonstrate something you do as part of your ‘tips’. Start by talking to your phone camera in the usual way and then, if you want, you can film yourself carrying out your tip as a separate clip.
  • If at any time you feel you could have said more or said it differently then please do not worry about sending alternative clips.

Thank you!