Hi, my name is Katie. I was diagnosed with CMTC when I was five months old. I am now 28 years old (in 2021) and I have lived my entire life with birthmarks on the right side of my body and on the left side of my face, neck, and head.
CMTC has caused several challenges for me. The right side of my body is smaller than the left, both in bone length and muscle size. I experience swelling in my right arm and hand, especially in warm temperatures. My birthmarks are also very sensitive to temperature: they turn purple in the cold and bright red in the heat. In addition, my body did not develop natural fat tissue on the affected side in the same way as other people’s bodies did. Because of this, I later had breast reconstruction surgery, a procedure that is also commonly used for people who have had a mastectomy.
Because my right hand is also my dominant hand, I have difficulties with fine motor skills. Everyday activities like writing, typing, and using common objects can be painful. At school, I was fortunate to receive good support, including speech-to-text software, extra time for exams, and other tools and accommodations. This support made a big difference.
I have been receiving laser treatments on my face for many years. When I was 12 years old, this was recommended because some of the birthmarks were close to my eyes. Even in 2021, I still receive these treatments every few months. It has been a long process, but the marks on my face have faded significantly, and my ophthalmologist believes that these treatments have reduced my risk of developing glaucoma.
I grew up in a very supportive environment. My parents encouraged me from a young age to choose my own clothes and be myself, which helped me feel “normal” among my peers. When I was younger, I would tell people I had a birthmark. As I got older, I explained that it was a vascular malformation. Because I felt confident about my skin and scars, these moments often became opportunities to educate others, and I rarely experienced bullying. Attending small schools also helped, as everyone knew each other and I didn’t have to explain my story over and over again.
One of my biggest challenges between the ages of 15 and 22 was working with doctors who had never heard of CMTC. It was often difficult to be taken seriously as a teenage girl, especially when my condition was sometimes mistaken for an allergic reaction or a burn. Over time, I learned how to advocate for myself more confidently. Today, I work with an excellent medical team, and when I am referred to a new doctor, they often look for someone who is willing to learn, do research, and truly listen to their patient.
Overall, although CMTC has brought challenges into my life, it has never stopped me from doing the things I love. I have played soccer, basketball, rugby, and volleyball, and I have rowed and swum throughout my life. I enjoyed school, was actively involved in student leadership, music programs, and peer-support initiatives, and I moved across the country for my post-secondary education to build new friendships and experiences. CMTC is part of my life, but it has never defined or limited my passions.
