I was diagnosed with a rare disease at three months old. After being born premature but seeming like a healthy baby, it was a shock to my parents when I became unwell.
In June 1997, I developed a chest infection. At first, this didn’t seem too bad, but mum and dad thought it would be best to have it checked. I was taken to my local hospital and from there, I was driven in an ambulance to the Royal Brompton Hospital in London. After tests and lots of examinations by doctors, I was diagnosed with a condition called Scimitar Syndrome. This is a congenital heart defect which means I only have one functioning lung. It is very rare as it only affects one in 100,000 people, so it was initially hard for my mum and dad because there is very little information about it.
Ups and downs
Since my diagnosis, there have been ups and downs, but I’ve pulled through. Nineteen years later, I still go for regular tests and checkups but I have achieved ten GCSEs, an extended diploma qualification and I’m now in my second year at university. This comes with its challenges but I am lucky enough to be surrounded by some great people.
At university, I always wanted to join a sports club and as I did gymnastics recreationally for ten years, I decided to join the trampolining club. I thoroughly enjoy it and actually, as I write this post, I am on my way to a trampolining competition! With only one working lung, trampolining is difficult; but I have never wanted my illness to stop me doing the things I enjoy, so I do as much as I can and everyone on the team is very supportive.
This year, I have worked with a charity called Fixers UK. The charity gives young people the chance to use their past to ‘fix’ the future through different mediums including films, flash mobs and posters. In July, I shot a film with two girls from the trampolining team about how you should believe in your abilities and not let your obstacles defeat you. This was an amazing opportunity and since then, I have been in two local newspapers and on a local radio show.
While this is all very positive, having such a rare condition can also be extremely frustrating. It’s very hard when doctors tell you that they’ve never heard of your condition before, or ask you to spell it. Sometimes they pronounce it wrong. I’m not asking every doctor to have all the knowledge about my condition but the way the doctor explains that they don’t know can be hard to hear. I think it’s important for doctors to show they care about your condition, no matter how rare it is. You might not know what our diseases are but we can feel them and they really do matter.
You can watch the film about my experiences below:
Katy is nineteen years old. At just three months old, she was diagnosed with a rare heart and lung disease called Scimitar Syndrome. She studies Childhood and Youth Studies at university and is an active member of the university’s trampolining team.