The story of Katie
My name is Katie and I was diagnosed with CMTC when I was 5 months old. I am now 30 years old and 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.
I have had a few complications from my CMTC. The entire right side of my body (affected side) 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.
Additionally, 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.
One ongoing treatment is the laser surgery I receive on my face. When I was 12 years old (2005), it was recommended I start using laser surgery to remove the marks on my face near my eyes. This is a procedure I still receive every few months in 2023. Though this has been a long journey, the marks on my face have dramatically faded and with the surgery, my ophthalmologist feels my risk for glaucoma has decreased.
I have been very lucky to have 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 to use those moments as 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 many doctors who have never heard of CMTC and struggle to work with a young woman as an equal, when having a conversation about an unknown matter. This was probably one of my biggest challenges from 15-22, 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. I also now have an amazing team working with me. I often find when I am referred to a new doctor, my team works 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 major part of my life I have never felt like it held me back from pursuing my passions.