Hi everyone,
I’m bumping this thread, particularly in relation to the PFS video podcast that is only weeks away. We have 3 courageous patients ready to participate, along with some other interesting guests, but I’d love if we could line up at least 5 patients to begin.
You are not alone - I have also struggled with the stigma and shame of this condition. For almost 7 years, I hid PFS from everyone except my family, and pretended I had a somewhat normal life. It was hell and incredibly exhausting, and I was always so worried what people would think, or whether they would believe me given my experience with clinicians. Over the last 6 months, I’ve told many people including my friends, work colleagues and boss, along with speaking publicly in the video for Rare Disease Day. I have been so pleased, and surprised, with the support I’ve received.
It’s easy to forget that these people are not clinicians, and for them, seeing me in despair was enough to offer their unconditional support. Some have even promised donations for our planned study in summer, which has been incredibly heartening. I think patients would be surprised at the support many will offer us publicly, especially when they understand the devastating human impact of this disease, and that it is not our fault.
Another overlooked aspect of speaking publicly is the effect it has on research. It is easy to dismiss our condition when it is presented in the abstract, but when real humans speak about its impact it cannot be denied. It’s also a necessary building block in getting more researchers involved. Many patients often speak about the need for more research, and this is a simple step you can take to help make that happen. It would be remiss to assume the problem itself is always appropriately appreciated, even by interested scientists. Patients suffering in silence is a big challenge to understanding of the problem. We don’t just need more people having a guess at what’s happening to people, and that includes academics. These projects can really help bolster understanding.
With that said, if you are interested in speaking to me on our new video podcast series, please reach out via PM.
We also have many exciting projects we’re planning for in 2021, but we need help. So if you are enthusiastic and would like to help in general, please reach out via PM also.
Best,
Mitch