Updated: Jun 5, 2020
Katy is 21 years old, a student from Oxfordshire and has Scimitar Syndrome. Katy finds the lack of information and signposting one of the most difficult aspects of living with her condition and is reaching out to find others who share her RARE journey.
Scimitar Syndrome, ever heard of it? I guess not as it only affects 1 in 100,000 people. It is a congenital heart defect where the blood drains into the wrong part of the heart, which means that the right lung doesn’t get any blood supply going to it, preventing the right lung from functioning. In short, scimitar syndrome is a heart condition where the right lung also doesn’t function and thereby someone who has scimitar syndrome has an overall reduced lung function and sometimes further cardiac complications. This can mean regular hospital trips and tests and uncertainty. Unfortunately, there is usually no cure. It is said that if you are diagnosed after two years old, your life expectancy is better than those who are diagnosed before the age of two, but why I don’t know; I know so little about my condition! Due to the lack of information on the condition it is hard to recognise which sources are reliable. After lots of research on supporting charities and organisations I could not find any.
"This leaves someone like me feeling alone, worried and isolated."
I hope in the future more support can be found, and if anyone knows of support for this I would love to be connected!
If you have Scimitar Syndrome or know of any Scimitar Syndrome support networks and would like to be connected to Katy please contact our editor on firstname.lastname@example.org