Insight Poster Findings

This is an image of a person. He is looking at information which is up on the walls. There are four large posters - all are asking questions. People have written their responses to the big questions on post it notes and have stuck them under the questions.

Insight sharing posters

Throughout the day we had a series of posters posing important questions of interest to people with Stargardt’s disease. You can find out what the hints and tips were below. If you have any more to add you can email them to us and we can add them to the page.

For more information relating to any of the suggested support technologies below do contact your local low vision services or patient support organisation.

What hints and tips can you share that might help others with your condition?

  • If you enjoy playing music: sight read music reader
  • CCTV readers
  • Lots of magnification
  • Get stronger
  • Ipad
  • The more you’re prepared to ask for help; the more you can do/achieve
  • People almost always like to help!

What support & services would you like to see offered for your condition?

  • Early support in dealing with the diagnosis
  • More updates on what research is ongoing
  • Help with transition to university and careers advice
  • Occupational therapy and advice for university students on careers and support
  • Guides/leaflets should be more user-friendly and easier to use
  • Legal advice concerning reasonable adjustments at work - what are my rights?
  • Better communications
  • Information on how to accept the diagnosis
  • New resources and gadgets!
  • ‘I feel I am all alone and the only person in my village/town with this condition’
  • Packages to support visually impaired people regarding mobile data. More data you have the more expensive it is.
  • Free TV licenses

What questions would you like research to address in relation to your condition?

  • Should I completely avoid eating Vitamin A?
  • More information on what is being done
  • How Stargardt’s progresses and what influences how quickly it develops?
  • Have leaflets updating patients on clinical trials and future plans
  • Clinicians should update more on what’s going on in the labs/clinic
  • How fast/slow disease progress? Any model?
  • Mechanisms of disease – mitigating and aggravating factors