Since launching the Moral Medicine channel, @Recovery18 and I have been very pleased and grateful for the volunteers who have stepped forward to give a full and honest account of their suffering caused by PFS.
This week alone, I shot 3 episodes with some very intelligent and motivated men who are not willing to take our current predicament lying down.
Additionally, since launching the channel, I have successfully secured an interview with Professor Gene Robinson who is working on MRI technology to map epigenetic changes in the brains of pigs. This part of our strategy to broaden the focus of the channel to include interviews with scientists at the forefront of biotechnological advancements, as well as successful community leaders from other rare disease communities. This is in order to strengthen the trust in science on the part of PFS sufferers, thereby providing hope, as well as to indirectly legitimise PFS by making it clear we are not a community of insane hypochondriacs.
We have other volunteers for the channel. But we would like to have YOU appear on the program. We want to make this the year we fundamentally change things for the community. Enough lurking in the shadows relying on antiquated solutions which have failed for over two decades. It’s time to come out and demand real solutions to a problem causing us all immense agony. If we build a critical mass of patients speaking out, I believe the stigma will begin to fade and it will be impossible to characterise this problem as a non-issue. I can assure you that since speaking openly about PFS I have suffered no personal ramifications to my reputation professionally or otherwise. Nor has @Recovery18.
If you’d like to share your story please DM me.