Blog Katie Allen August 2024
One of the most obvious changes when moving from pediatrics to adult care is the changes in the hospital experience. This is a topic that in British Columbia, Canada is something that medical professionals are trying to address but seem to be having a hard time addressing the transition from a truly patient perspective. It […]
Blog Katie Allen July 2024
The transition from pediatric to adult care – Transfer of medical records One major challenge in Canada with a rare disease is the transition from pediatric to adult care. My transition was, unfortunately, not a resounding success, and I would love for my failures to be learning opportunities for others, rather than just the stumbling […]
Blog Katie Allen June 2024
It has honestly been a rough month here, and I figured writing about it may help so please bear with me, as it is likely to be very stream-of-consciousness. About four-and-a-half years ago my father passed away after a brutal fight with cancer, at the time Mom and I put everything on hold to care […]
Blog Katie Allen May 2024
I recently had an amazing appointment with a new specialist and while it can seem like a little thing, I have learned that the information my GP provides a new specialist, for a treatment, or while getting images done can make or break the visits and results. One example of this going very poorly was […]
Blog Katie Allen April 2024
[This time I wanted to address an interesting aspect of living with a visual difference that I feel doesn’t get discussed often enough. The reality for many people who have CMTC or other vascular birthmarks on visible locations, especially the face, is the assumption many people make that a physical difference means a mental impact. […]
Blog Katie Allen March 2024
Happy Belated Rare Disease Day! The last couple of months have been exciting, with launches and decision-making occurring in Canada, and I am so excited to share the changes coming. Canada hosted a Rare Disease Day Conference on this so very rare day February 29th. We also launched the first Canadian Rare Disease Network. This […]
Blog Katie Allen February 2024
First off, Happy Rare Disease Day 2024! Last month we delved into the realities of having people stare at or bizarrely interact with you because of a skin difference. The sad reality is, that when you have a visible difference, this is going to be a part of life, and having a few strategies to […]
Blog Katie Allen January 2024
One reality of having any sort of condition on the skin is The Stares. People looking at you or doing double takes as they walk by or interact with you. Obviously, these interactions are experienced more broadly than just those with skin conditions, but to speak from my own experience, I will focus on these […]
Blog Katie Allen December 2023
Happy Holidays from Canada. One question I often get asked by patients and families is about tattoos. I have multiple tattoos, including a couple on top of my marks. Like many people with vascular concerns, I had doctors discourage me from getting tattoos earlier in my life. However, as I got older, I faced the […]
Blog Katie Allen November 2023
October was a busy month packed full heading to the Netherlands for the CMTC-OVM Patients’ Advocate Training and the Members’ Conference. I also had the fortunate opportunity to visit The Hague and see the Peace Palace. It is always exciting to meet other patients and families walking this rare vascular malformation path. The chance to […]
