Living with a Rare Skin Disease (CMTC) and Overcoming the Challenges that Come With It
Katie’s life story is unique, having been born with a very rare skin disease known as Cutis Marmorata Telangiectatica Congenita (CMTC). Growing up in rural Canada, where specialized healthcare was scarce, Katie and her family often traveled over 1000 km for care and treatment. Her journey isn’t just about managing a rare skin condition; it’s also about learning to navigate a complex healthcare system and advocating for the right care.
Life with CMTC
Katie’s condition, which most noticeably affects her skin’s appearance, also presents challenges to her bone and muscle structure, as well as her eyesight. CMTC is more than skin deep. Katie’s skin is highly responsive to temperature fluctuations, turning deep purple in the cold and bright red in warmer environments. She often experiences swelling in her right arm and hand, especially in warmer temperatures. Even her eyesight has been affected. Through consistent treatment, including laser surgery and green light therapy, she has managed to preserve her vision, a significant victory in her ongoing battle with CMTC.
Katie also deals with a fine motor skill disability in her dominant right hand. Despite these challenges, she has found support in her family and school community over the years, ensuring her education was minimally impacted by her condition. Overcoming these obstacles was far from simple.
Healthcare Challenges
Transitioning to adult care brought its own set of challenges for Katie. She learned the hard way the importance of maintaining medical records and the critical need for self-advocacy in a healthcare system often unprepared for people with rare conditions like hers. Katie often found herself needing to educate dermatologists and specialists about her disease. Without this self-advocacy and education, accessing necessary care would have been impossible. For Katie, these experiences highlighted the gaps in the system and underscored the importance of being proactive in managing her own healthcare journey.
Mental Health and Overcoming Barriers
Despite physical challenges, including a limb length difference and joint hypermobility, Katie found passion in sports. Her mental fortitude, shaped by both supportive therapy and her family’s guidance, helped her navigate the emotional toll of her condition. She learned to grieve her limitations while also celebrating her abilities, a balance that has been crucial in her journey.
Personal Highlight
Katie recalls a poignant moment at age 19, attending a conference in Washington, DC. There, she met others with vascular malformations. “I walked into the room and just started to cry,” Katie shares. “Seeing someone who looked like me for the first time was overwhelming. It was a moment of connection, a realization that I wasn’t alone.”
Conclusion
Katie’s story is a powerful narrative of resilience, self-advocacy, and hope. Her journey with CMTC has been challenging, but her strength and determination have transformed these challenges into opportunities for growth and advocacy. As she continues to navigate her path, Katie serves as an inspiration to others facing similar struggles.
Join Our Cause
Katie’s journey highlights the gaps in healthcare for those with rare skin conditions. Be part of the change. Join us in advocating for better healthcare policies and support systems. Sign our open letter and help make a difference in the lives of individuals like Katie. Together, we can ensure that no one is left behind in their healthcare journey.