A carer's journey with rare disease
Monday 20th January 2020 marked a significant date for the rare disease community. On this day Kay Parkinson, supported as always by her husband John, presented their story for the last time before retirement.
This is a story of how a rare disease can affect a family and how it can change their world for ever. It has inspired so many people because it is all about love, about parents never giving up and despite personal tragedy continuing to make a positive difference so others should not have to suffer the same experience.
This story has been presented at many rare disease congresses over the years. One of the reasons it is so powerful, is simply because it completely resonates with so many people affected by a rare disease.
There are approximately 6,000 rare diseases. Only a minority have a successful treatment. A rare disease may affect thousands of people or may only affect one person. Collectively rare diseases are estimated to affect three million people in the United Kingdom alone. There is so much work to do to raise awareness, to ensure successful diagnosis rates are vastly improved. The families and rare communities all hope that many more successful treatments are developed and that they are all accessible. This work is happening and is growing, but so much more still needs to be done. Kay is simply an inspiration.
This video is a tribute to her husband John, their children Matthew and Charlotte and ultimately to Kay, an amazing lady who has never given up and whose story through this video will hopefully continue to inspire for generations to come.
For more information about Alstrom Syndrome
Date of preparation: February 2020