Patient Stories

We believe that sharing real life stories by real people is the most powerful way to connect with others and raise awareness about the issues facing those affected by Inherited Metabolic Disorders.

Our Patient Insight Series is a collection of videos and written accounts of living or caring for someone with an IMD.  Covering important and often unseen experiences, such as coping with the diagnosis of a rare condition, to accessing emergency care during the coronavirus pandemic, taking part in clinical trials and much more.  Our aim is to empower patients and families by providing a platform for those affected to have their voice heard, by telling their story and sharing their personal experiences to help others facing similar challenges.

Patient Insight Video Series
We have recently created a series of video interviews with patients and families about the impact of the coronavirus pandemic on their care, treatment and wellbeing.  Click here to watch the videos.

Patient Insight Stories
We have a wide range of stories, shared by our patients and families about their personal experiences of living with, or caring for someone with their condition.  Click here to read the patient stories.

 

Share your story

By sharing your own personal experience of living with, or caring for someone with an IMD, you can make a difference by:
– Helping others facing a similar situation, to know that they are not alone
– Encouraging patients and families to get in touch with Metabolic Support UK; we are here to help
– Inspiring people to donate and fundraise for Metabolic Support UK, enabling us to continue providing our vital services.

Get Involved!

Taking part in our video series
If you would like to take part in a video interview over Zoom with a member of our team, please get in touch!  We will have a chat with you beforehand about your story and the questions we will ask, and make sure that you feel comfortable before filming.  We will send you a copy of the recording for approval before publishing.  If you would like to take part in this important project, please contact jess@metabolicsupportuk.org

Writing your story
If you would like to share a written account of your experience, we would love to hear from you.  We have prepared some simple guidelines, but if you would like to discuss your story with us we would be happy to write it up (you would have approval before it is published anywhere).

  • Please ensure that your story is no more that 750 words.  It doesn’t need to be too formal; just use your own voice and we can edit to suit the format.  We will always send you a final draft for approval before posting.
  • Describe how situations and challenges have made you feel; it is easier for readers to relate to feelings than descriptions of events.
  • Don’t be afraid to talk about any challenges you have faced.  Try to include:
    • How you coped/how you are coping now
    • Anything you would do differently
    • Did anything or anyone make a difference to you
    • Your hopes for the future
    • Your tips and advice; what would you say to someone going through a similar experience?
  • Please include 3 photos to illustrate your story that are suitable to be cropped to a square shape.
  • Please note that by sharing your story, you agree that Metabolic Support UK can use this on the website, social media and other materials as appropriate for the purpose of helping other families affected by IMDs.
  • Please e-mail your story to margaret@metabolicsupportuk.org