The story of Katie

I was diagnosed with CMTC when I was 5 months old. At 29 years old, I have lived with markings down the right side of my body and the left side of my face, neck, and skull all of my life.
Additionally, the entire right side of my body is smaller in both bone length and muscle girth. In my right arm and hand, I deal with some swelling that can be exacerbated by the heat. All of my marks are temperature affected, they turn a lovely purple in the cold and a very vibrant red in the heat.
I have a fine motor disability in my affected and dominant hand which can make things like writing, typing, and using day-to-day items painful. Through work with teachers and disability departments, I have had very few challenges in schools getting the accommodations I need such as speech-to-text software, additional time on exams and other tools and technology for this issue.
I have been fortunate to be around a supportive environment growing up. My parents encouraged me to choose my own clothes from a young age which helped foster a sense of normality with my marks. I spent some years explaining to children my age that I had a birthmark, and as I got older explaining what a vascular malformation was, but my confidence in my marks and skin helped me transform those moments into teaching opportunities and I rarely dealt with teasing after I shared my story. This was helped by attending small schools where everyone knew each other so I rarely had to repeat my story to classmates over and over.
However, I have spent many years working with doctors who have never heard of CMTC and struggled to work with a teenage or young woman as an equal; especially about a matter where they may not be knowledgeable. This was probably one of my biggest challenges from 15-27, getting doctors to listen to me about my condition when they had not heard of it, especially when the first thought was often an allergic reaction or burn. As I have aged, I have gained confidence and skill in advocating for myself when working with doctors who don’t know my condition, but I also now have a fantastic team working with me. I often find when I am referred to a new doctor, they work to find someone willing to learn, do research, and listen to a patient when needed.
Overall, though CMTC has presented some challenges in my life I was still able to participate in all the activities, sports and recreational passions I desired. I played soccer, basketball, rugby, and volleyball, rowed and swam throughout my life. I also enjoyed school, and have been highly involved in school government, music programs, and peer support programming throughout my education. I moved across the country for my post-secondary building another network of friends and colleagues and joined more volunteer and athletic opportunities. Though CMTC has been a part of my life I have never felt like it held me back from pursuing my passions.