Disease Journey

---

I was born with a large and deep port wine stain on right side, from my hip to my toes. At age five, my grandmother noticed I was standing funny and it was discovered that I had a scoliosis of the spine. This was later found out to be because of the extra blood flow my growth plates were getting due to the port wine stain, causing my right leg to grow excessively. From then, I had my bone age tested once a year, to predict when I would stop growing so they could try and fix my scoliosis. They did this by predicting how long I would grow for and, and then removing my growth plates in my right leg so my left leg could catch up and therefor straighten my back. My bone age was older then me and increasing in age faster than my actual age, so this was done in 2008 when I was 9/10. I stopped growing at 13 ish, younger than a typical female. For my entire life, I had been in increasing amount of pain and had always struggled with walking long distances and exercise, I finally was actually diagnosed when I was 15, up till then, my doctors had just been treating my symptoms. It happened in a strange way, my mum saw something in Facebook about a girl with this condition, and she thought that sounded and looked just like me. We took this to my vascular specialist, he went away and did some research and came back to us and confirmed I had it. This was also around the time when things started to get worse, I had increasingly more vascular problems and developed varicose veins. The deep vein valves in my leg stopped working, worsening my lymphadema, pain and swelling. I had to begin taking strong medication which had since ruined my stomach. My condition triggered other conditions that’s I now have, including fibromyalgia and chronic fatigue syndrome. I have to wear compression garments and now rely upon crutch’s and more recently a wheelchair. Through the years, my conditions has also caused my a number of mental health issues.

It’s quite funny actually, when I was young, I was written up in a scientific journal by my paediatric specialist, because I confused everyone so much. Ironically, I am now a biomedical scientist, so I don’t know if that was foreshadowing.