Real 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.

As the umbrella patient organisation for over 400 Inherited Metabolic Disorders, we work hard to raise awareness of these rare conditions.  One of the most effective ways we can do this is by providing a platform for those affected to have their voice heard, by telling their story and sharing their personal experiences.

We need your help!

By sharing your own personal experience of living with, or caring for someone with an Inherited Metabolic Disorder, 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 fundraise for Metabolic Support UK, enabling us to continue providing our vital services.

If you would like to share your story, we would love to hear from you.

  • 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, magazine, social media and other materials as appropriate for the purpose of helping other families affected by Inherited Metabolic Disorders.
  • Please e-mail your story to