Health The advice you need
Not so PATIENT easy breathing I True-life
CASEBOOK
But I won’t let my one in 100,000 condition stop me
I don’t know what the future holds...
WORDS: EMMA ROSSITER
Katy Baker, 22, Banbury
they told my parents. f you take one look at me, you’ll probably A congenital heart defect think everything is affecting the lungs. fine. I appear happy In my case, it meant I had and healthy. only one functioning lung. But, believe it or not, Scimitar syndrome affects I’m not actually as well only around one in every as I seem. 100,000 people. Because behind my There was no research, smiley face and positive no treatment available. attitude is a condition They couldn’t even give us a that’s affected my life prognosis. All they could do since I was 10 weeks old. was observe me. Born eight weeks My life had this big premature, in March question mark over it. 1997, I had the doctors From then immediately concerned. on, I was After being checked over, back in I was given the all-clear hospital and sent home with my every six parents six weeks later. months. But then I got a chest Of infection. It was so serious course, that I was admitted to I knew Royal Brompton Hospital – a specialist heart and lung hospital. After multiple scans and blood tests, I was eventually diagnosed. ‘Katy has Making the scimitar most of life syndrome,’
20
no different for many years. But at primary school, it began to bother me. ‘It’s not fair!’ I’d moan aged 6. ‘Why don’t other kids have to go to hospital?’ I hated it if I had to miss a school trip. There were the countless times at high school when I came last in PE. Always breathless. Mum would write notes to get me out of doing cross-country. ‘You can just walk it,’ my teachers said. I desperately wanted to be normal, but no one could give me any help or answers. It took me a long time to accept it. Even now, I still have bad days. But I’m trying to speak out more, and working with Genetic Alliance UK has been a massive help. I know I’m not the only one living with
a rare and hidden illness. And I can live a normal life. I graduated, got a job and work nine to five like everyone else. I just wish there was more out there to help me, and others, understand. My lungs function at less than 50%. And that’s not all. I suffer with back pain and anxiety. I hope my story can raise awareness and help to raise funds for life-changing research. Sadly, there was no telling what could happen to me when I got diagnosed. In fact, I still have no prognosis. I just try to make the most of every day. Everyone takes breathing easily for granted. But not me. It’s a daily battle I have to live with.
I wanted to be normal but no one could give me any help
More info? For more information about rare conditions like Katy’s, visit geneticalliance.org.uk
