Hi! I’m Katie, I’m 35 and I have TSC. My TSC story should have begun when I was a baby, but a series of events put off my diagnosis until much later in life.
Doctors realised that there was something very wrong with my heart while my mum was in labour. Mum told me that the delivery room was like and episode from M.A.S.H and soon after I was born I was whisked away for test after test. It was assumed that I had aorta stenosis and I was scheduled for open heart surgery at three weeks old. The surgeon opened me up, saw I actually had a rhabdomyoma (a heart tumour associated with TSC) and they realised that, without a heart transplant, it was unlikely that I would survive.
But survive I did! However I wasn’t diagnosed with TSC as my paediatrician told my mum that “I was too intelligent to have tuberous sclerosis. Unfortunately, back then mum had no idea how ridiculous that statement was!
So I went through childhood like most other kids. At age 7, I moved to South Africa and rarely thought of my operation as a baby. If I ever did, mum would say, “it could be worse, you could have tuberous sclerosis!” South Africa was a wonderful place to grow up, but in 1992, our family moved back to the UK. I did my GCSEs and passed with flying colours. However my life changed completely during my A Levels when, aged 18, I became very poorly at school. I had many tests including a brain scan which showed the tell-tale tubers of tuberous sclerosis. My world fell apart as for 18 years I had thought myself TSC free.
I think I was in denial for a while, but I finally got in touch with the Tuberous Sclerosis Association in my early twenties. However, my tango with tuberous sclerosis was far from over!
Eight years ago, after many, many years of pain, surgeons realised I had a tumour in the joint between my right collarbone and sternum.
In August ’08, I underwent a 11 hour surgery to remove a section of my collarbone and graft a section of my fibula into my chest. It was at this point that I realised I couldn’t ignore TSC any more and I went on my first TSA Outlook Weekend. It was amazing and I instantly made life long friends. Little did I realise at that time that one of those friends, Andy, would become the love of my life.
I went on to have five surgeries until it became clear that the grafts were never going to work properly. It was decided that I needed to have my collarbone completely removed. So, two weeks ago, on 14 May 2015, I went down to theatre to have it taken out. I can honestly say that I was utterly petrified! A few hours later, I was in recovery and I was in far less pain that I had imagined. After a few days, I was allowed to leave hospital and go home to continue to recover.
I’m getting stronger every day and I am amazed by how little pain I’ve had. I still have a long way to go, but I’m getting there!
But, I’m not done there! From something so painful, was born something positive. Some time ago, someone told me to cover my scars, in case “I offend someone!” Well, I thought, “Stuff that!” and I decided to make it my personal mission to help to stamp out negative body image. Hence, Sport Your Scars was born! I set up a Facebook page and I posted a photo of my scars. The response was amazing! It’s only in its infancy, but I truly believe that scars do not define us and that EVERY woman is beautiful, irrespective of her shape, size or skin tone.
If you’d like to follow my story, you can find me on Facebook or follow my video log on YouTube here: https://www.youtube.com/channel/UCLgMCfg-HVY1xms6iBVvR8Q
Also, you can lend your support to the #SportYourScars campaign by backing our Thunderclap here: https://www.thunderclap.it/projects/26780-sport-your-scars?locale=en