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 […]
Blog Katie Allen October 2023
Happy Fall and, from Canada, Happy Thanksgiving! One of our local farms does a pumpkin festival every autumn, as well as a tulip festival in the spring, it’s always fun to see how they repurpose their decorations between the events. The windmills are just as cute surrounded by pumpkins as in the tulips. These past […]
Blog Katie Allen September 2023
Rocking the new brace! A few months ago, I posted that I had been cleared to purchase a new stabilizing knee brace and that I had received funding to support this expensive venture. As of this month, I officially started to wear the new 3D-printed stabilizing brace. For some context, I had a fibreglass brace […]
Blog Katie Allen August 2023
One tense moment for anyone with multiple doctors and specialists is when they disagree or need different things. One moment I recently went through was a change in regulation regarding referrals, where my specialist was now required to get a referral more often than my family doctor thought necessary. It led to tense appointments with […]
Blog Katie Allen July 2023
This month’s blog is a bit more stream-of-consciousness than usual and I apologize, but it felt like something I needed to say and this was an appropriate place to work through some emotions. Likewise, this month’s picture is of a favourite walk of mine that I go to clear my head. I found out today […]
