Finding community as a rare disease patient can sometimes be the most difficult part of the journey. I was so lucky to connect with CMTC-OVM when I was 19, and though I lost contact for a few years while I was at university, knowing there was an organization out there, with people like me, provided me with real comfort. Fast-forward to COVID, and I think a lot of people were looking for community, so for me, the beginning of the Patient Advocates program at that time was a sign to get back to that community. It is easy to forget how much easier the internet has made it to find these communities of people like us around the world with our rare conditions, but I think that the human connection in person is still one of the greatest gifts we can give ourselves and others.<\/p>\n
Goodness knows, I know the struggles that come with getting together in real life and getting to see members of your community. I am currently writing this blog 7500 km away from where our annual conference is held. It is a $2000 flight to get there. You only get so many holidays off work. The list goes on and on. But there is nothing like that face-to-face meeting once again, no matter how long it takes. This is something I cannot commend CMTC-OVM enough for, for having the opportunities to meet: Family Weekend, Family Day, the Conference; all of these chances for the next generation to grow up not only with the online connections we now all benefit from, but to have those deep personal connections to people like them\u2026 something I never had and didn\u2019t know I was missing until at 19, having never thought about my condition and loneliness as intertwined, I stood in a room of people like me and cried. Over a decade later, I still don\u2019t know if they were tears of relief, joy, sorrow, or some mix of the lot.<\/p>\n
I have continued to make connections, now working on the Globalskin Youth Leader Council and learning from the inspirational stories of the young leaders all around me. It’s always brought me some joy to log on to a meeting at 6 am, while my co-workers are looking at 9 pm, as we work to finish the next project or plan. To know that those of us with skin conditions, rare conditions, rare skin conditions are around the world \u2013 a community ready to be made.<\/p>\n
There will always be days when the loneliness of my condition sets in, where the dark fights at the door to overwhelm, but just as that dark is always there, our community has shown that it can be a light to guide the way from across the world or at my next visit. Here\u2019s to finding my way back once again.<\/p>\n","protected":false},"excerpt":{"rendered":"
Finding community as a rare disease patient can sometimes be the most difficult part of the journey. I was so lucky to connect with CMTC-OVM when I was 19, and though I lost contact for a few years while I was at university, knowing there was an organization out there, with people like me, provided […]<\/p>\n","protected":false},"author":2,"featured_media":76464,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[486],"tags":[],"class_list":["post-76468","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog-katie-allen-en"],"acf":[],"yoast_head":"\n